Spinning Away.

(*I realize I’ve been silent in this space for a long time. When you read this post, the reason for my silence will become apparent. Truth be told, I had no intention of writing today…until my morning meditation – that I decided I’d better do at 1:00 in the afternoon! I practiced a guided meditation with Sarah Blondin of Insight Timer. As I let the hot water of the shower I so desperately needed fall over my body, I closed my eyes as Sarah said the words, “you’re ok, you’re ok,you’re ok.” I saw my Inga put her hands on my cheeks. She looked me in the eyes and said in a sweet and gentle voice, “I’ve got you, I’ve got you. You’re ok, you’re ok, you’re ok. You’re not alone. You’re not alone.” YOU ARE NOT ALONE.

~Spinning Away~

I was doing the breakfast dishes after having dropped the children off at school. A song came on that made me feel especially light and happy. The song brought me back to a special and joyous time. Before the Psychosis. Before moving away. I smiled for the reminiscing. Suddenly, the music stopped. I turned around to see Andrew. He looked at me, his eyes pensive, his body tense. He said to me, “I can’t listen to that.” I was confused. He loved that song! I asked him, “why?” He explained that it reminded him of the most miserably difficult time of his life: My MS relapse, psychosis and all of the events that followed. This struck me and is something I’ve often contemplated over the past year.

When a family goes through struggle or trauma, they go through it together. Partners and married couples rely on each other to manage the struggle. They lean in to each other. They make decisions together. It can often draw a couple closer together. Conversely, it can tear a couple apart. Andrew and I had an experience somewhere in between becoming both closer and more distant. We were going through the same crisis together but were living in two different worlds. As a result of my psychosis, we couldn’t have been further apart from one another while experiencing the tumult our journeys had presented. I was spinning away in my own world. He was watching it happen. In my manic state, I had never been happier. I felt, in some cases, enlightened. During this period I genuinely believed that he and I had never been happier in our 9 years together. As I write this, I still remember those feelings vividly. I kept telling our closest friends and relatives that despite everything we were going through, we had never been happier. Meanwhile, Andrew had a front row seat of what was happening with me and it was terrifying for him. Yet, in my state at the time, I believed he felt the same way as I did. Blissfully happy and in love. Nothing could be further from the truth. He was living in fear. He can’t recall a more traumatic time in his life. As I came out of the psychosis and began the healing process, it was Andrew’s time to begin spinning away. I fear I didn’t realize how dark a space he was living in until much too late.

Trauma can awaken within us our innermost demons. Between the light we radiate there are also shadows. When faced with our greatest challenges, the shadows often rear their ugly heads. Sometimes the light within us is strong. We are vital enough to let the light cast out our shadows. When beaten down by the tumult we sometimes face on our journeys, we can lose our vitality. We become weary. It becomes difficult to see the light and we give in to our shadows. Somehow, we feel safer in that space…in the darkness…for the light is too much to hope for anymore. The loss has been too great. Sometimes still, it’s necessary for us to face our shadows in order to begin a deeper healing process. The loss Andrew experienced through our trauma; the fear of what he might lose, brought to the surface all of his darkest shadows. All of my darkest shadows. All of our darkest shadows. On my trauma journey, I was able to see so much light because of the darkness. I was like a snake needing to shed it’s skin. This is an incredibly arduous and painful process for the snake, but necessary if it is to survive. Better than ever before, the snake emerges with new skin. The struggle, the pain, the loss makes all things new again. This was how I was able to face my circumstances. My focus was my deep emotional and physical healing journey, second only to my daughters and theirs. I was focused on that path. My journey was clear to me. I was walking the path before me in new skin. Andrew’s path was not mine. I was in the light. He was still struggling with his shadows. He couldn’t seem to make it out and our paths split in two. Beside each other, yet separate from one another, we had begun our fragmented journey. It’s as if our trauma was a bomb, set off on our road to break everything; scattering the broken pieces of our lives onto the ground. We picked them up. Fragmented and beaten down; our road split in two. Andrew spun away on one path and I on the other. Shadows and light, light and shadows, back and forth, to and fro. Spinning away….

Andrew sunk in to a deep depression. This caused him to suffer a relapse of alcoholism, testing us all to our cores. These sicknesses are thieves. Thieves of truth, thieves of joy, thieves of life; Insidious and slow setting in. They not only steal from those suffering from the affliction. They take as much as they are able from those who love the afflicted as well. These thieves care nothing for anyone around them. This is when hard decisions need to be made – because we must not let the thieves take anymore than they already have.

We will love each other through this. We are family. We will always be family. Sometimes family looks a bit different than expected. At this point, I’m not sure what mine will look like in the end. I do know, no matter what, Andrew will be a part of it.

*I’m writing this deeply personal account because it is my greatest hope, that by talking about it, the stigmatization of both sicknesses will end. We should be talking about it. Please feel free to reach out here. We can discuss these things here. Alcoholism is a disease that so many are suffering from. Depression is a disease that so many are suffering from. There should be no shame. There will never be shame in my house; only love.

The song I was listening to while doing the dishes that morning was “Spinning Away” by John Cale & Brian Eno. Take a listen. Lyrics below. https://www.youtube.com/watch?v=-INeMspNSQ0

Spinning Away
Up on a hill, as the day dissolves
With my pencil turning moments into line
High above in the violet sky
A silent silver plane – it draws a golden chainOne by one, all the stars appear
As the great winds of the planet spiral in
Spinning away, like the night sky at Arles
In the million insect storm, the constellations formOn a hill, under a raven sky
I have no idea exactly what I’ve drawn
Some kind of change, some kind of spinning away
With every single line moving further out in timeAnd now as the pale moon rides (in the stars)
Her form in my pale blue lines (in the stars)
And there, as the world rolls round (in the stars)
I draw, but the lines move round (in the stars)
There, as the great wheels blaze (in the stars)
I draw, but my drawing fades (in the stars)
And now, as the old sun dies (in the stars)
I draw, and the four winds sigh (in the stars)

(Im)material

When I was hospitalized as a result of the psychosis, the business of packing up our house and belongings was being carried out by the owners of the house, who were friends of ours. Andrew had to then drive back across state to load the U-haul of all of our boxed belongings alone. He loaded all of our material possessions into the truck. Our life was boxed up and loaded in a period of four days. I was out of the hospital by this time and recovering. The U-haul pulled in to the driveway of our family’s home. We stayed one last night there and the next day, we all drove to the house Andrew, Charlotte, Georgia and I would try to make our home.
At this time, my brain was still recovering from the trauma. I was a bit confused about everything and still didn’t have full memory of what had happened. I was trying desperately to make everything exciting and happy for my girls. I was putting forth the attitude of “This house is so wonderful!l and “Home is wherever we are together!” all the while, I was putting the house together. Trying to figure out how in the world I was going to fit the much too large furniture in to our new, much smaller house. Some we needed to get rid of or trade out. My dining room table, which I loved and had recently purchased was the first thing that needed to go. It’s not as if hosting nice dinners was in my near future anyway, which is what I told myself when I needed to let it go. Of course, we didn’t move our piano from Walla Walla. I missed my piano so much, as did my girls. I did everything in my power to arrange the smaller space so that we could get a new piano. I was successful in that endeavor. There’s always a free piano lying around somewhere as nobody ever wants to move such a big and heavy piece of furniture. It felt more like home once the new to us piano arrived. I continued to unpack our lives. As I worked on putting things away and in place, I noticed many things were missing. It started with the girls’ clothes. My daughters love to dress matching and I noticed many of their matching outfits had, instead of two in their respective sizes, now just one. I found it odd but thought the missing article would show up. Remember, I was still slightly confused and had memory issues as a result of the trauma to my brain. As I unpacked, I continued to recover and was becoming more aware of the number of things missing. Clothes that were family heirlooms, handed down generations and meant to be saved were not here. Precious art that I had packed away intentionally for saving, including the girls’ annual self portraits were gone. This was particularly difficult for me. The self portraits they did that year were spectacular and we did them in our homeschool very shortly before the psychosis set in. I had planned on framing them. That period of time represents some of my happiest memories. The detail and meaning behind their portrait art means a great deal. We spent lots of time talking about them and why they as individuals were special. I’m so grateful that I took pictures of the portraits. I’ll print them some day. A print will be better than nothing and I’ll still be able to frame them.
Georgia’s favorite books that I had specifically packed in their own box were unpacked and that same box was filled with different items. Those books never turned up. A hand made, copper wire candle holder – a birthday gift from my dearest friend – gone. My friend had the same one. I admired it and it was her gift to me the year before. 8 red, black-out curtain panels meant to accompany the custom curtains made for the girls’ room, nowhere to be found. Even my favorite chair; the only thing I still carried with me from childhood. I had the chair since I was 14 years old. It was given to me as a gift from my sweet, elderly neighbor. It was a director’s chair. It was given to me because he knew I loved it and it was a nod to my involvement in the performing arts. It was a collectible, built of a solid chrome frame and black leather. I will miss that chair for the rest of my days.

These things, just stuff. Material. We were all together and safe so the “stuff” was immaterial. This is what I tried to tell myself.

In the space of 3 months time, I had lost my mobility, my job, my home, my future plans, even some friends. I had lost control of my life. Nothing that had happened was in my control. The material “stuff” was something that should have been easy to control. Some of it was so basic and it was just material….so it should be here and I should have known what to expect in terms of what would be here, so that I could organize my life accordingly – with my material possessions. Right?
WRONG. I cannot express to you how emotional that fact was for me. I would have periods of such anger and sadness over the “stuff”. It seemed easier, perhaps to grieve those things than to consider all of the other more important things I’d lost. While some of the things gone certainly hold sentimental value and are perhaps irreplaceable, most of what was lost is simply material. Material that is replaceable. We are here together and wherever we are, that is where home is. This is what I repeated over and over to my daughters, but as I consider it now, I was the one who needed to hear those words.

Today, as we approach Christmas I’m thinking a lot about material. Of course, we’re in the middle of a pandemic. We are underemployed as a result and our finances aren’t able to fund anything for Christmas. I’ve been trying to get my head around how we will be able to make it special for the children. They’re still young and deserve a little magic. They could really use some magic this year more than ever. I put out a post on our local community page inquiring about any American Girl Dolls that might be lying around and if an older girl might be willing to part with them. The outpouring of love and giving has completely overwhelmed me. Many strangers responded with a list of items they’d be willing to give. A friend of mine saw the post and called me the next morning. Her family does a “Secret Santa” gifting each year for someone in need. She wanted it to be us this year. She happened to know someone who had just cleaned out her older daughter’s toys. There were several American Girl Dolls in the lot. My girls would get the doll they wanted! They will get their magic on Christmas, thanks to the generosity and love of others. I cannot adequately express my gratitude. Of course without these gifts, we would be fine. We would have done our best to make it special, after all, the dolls are just more material possessions. But these dolls will allow the magic to stay alive for my children for just a little bit longer. You see, sometimes material is not so immaterial as I’ve tried to make it seem this past year. We have emotional attachments and connections to our things. Some of the material we have represents a very specific and special time. I’m certain that these dolls this Christmas, will represent a great deal to my girls. Someday they will reflect on receiving them on Christmas morning and it will conjure up specific emotions special to their own stories. I cannot wait to see the light in their eyes as they are reminded that magic still exists in the world. My hope for you this holiday season, is that despite these challenging times, you’re able to find one small thing that helps you to believe in the magic again.


Cause, effect, courage and empathy

It has taken me some time to write another post because I needed to consider what it was that I really wanted to communicate. I have a lot to unpack and it’s important that I choose the right suitcase. This piece is quite personal in particular as it involves my husband Andrew, to a deeper degree. It has been with love, care, consideration and his permission, that I write this. These extraordinary times we’re living in are having an enormous impact on so many. I hope that though our story is unique in some ways, there are elements here that may apply to others reading this and if nothing else, perhaps in sharing it, I might be able to encourage others that they are not alone. YOU are not alone. I’ll be specifically addressing depression, anxiety and addiction. We know that for many, these things go hand in hand. We also know, that during this period of social distancing, lockdowns and job loss, many of us already facing these challenges are suffering.

C A U S E and E F F E C T:

It was 11pm midweek and I was still awake. It was far past my bedtime as I usually go to sleep when my girls do, but I was deeply entrenched in the Netflix series Ratched. Just as I had conceded that I needed to go to bed, my phone rang. I looked to see who’d possibly call at this hour and was surprised to see that it was one of my dearest friends, Maria. My surprise was in that we hadn’t communicated much at all in the past year and I’d certainly not received a late night call from her since moving across the state. You see, when I suffered my M.S. relapse and subsequent psychosis, I temporarily disappeared; literally and figuratively. We left our home and never returned. We were in crisis. It was an emergency and there was no time to make the connections that are generally made prior to moving. Compound that with the fact that my family and I were healing from trauma, moving into a new life, in a new town, all while continuing to suffer from physical limitations caused by the multiple sclerosis. To say that my plate was overflowing is an understatement. The luxury of actively nurturing relationships hasn’t been a thing this past year. Those whom I have managed to keep up with have been relentless in their reaching out and unconditional love for me and my family. I missed Maria very much and to see her name light up on my phone caused my heart to leap. I answered, “Maria!” as quietly as I was able despite my excitement, tears rolling down my cheeks. Where do we even begin? Life had been chalked full with much for both of us. She too has a young family and has faced many challenges in the past year. She and I used to regularly have late night phone calls after kids and even sometimes husbands were asleep. She wanted to know how I was, no matter how many times I told her that I wanted to know how SHE was. I thought if we could just talk about her I would be able to distract her from the question of how I was doing. I hadn’t planned on telling her the truth despite the fact that we had always told each other everything. I tried to hold back tears but couldn’t. She knew something wasn’t ok. Maria always knew. I finally came out with the fact that I wasn’t doing well. The truth was, Andrew had been struggling for some time and he was currently not living with us. I told her that I had experienced some guilt about it – but before I could finish she scolded me. “Tricia Rhea, don’t you dare say that! Don’t you dare!” I said, “But Maria, it’s cause and effect”

Cause and effect. My husband had in the past year, watched his wife go from vibrant and active to struggling to walk and suffering from cognitive decline. He then witnessed my eventually suffering from a psychosis caused by the medication being used to treat the disease. My sickness necessitated him leavIng two separate jobs in a period of one month. He had to manage everything without me and I needed almost constant supervision. He needed to get me medical attention. He needed to make sure our children were safe. All of this and he needed to work. We lived far from family. I am not sure what he would have done without the help of our friends and family who drove hours without notice to step in. For context, while in psychosis, I was in a completely manic condition. I was not really living in reality on many levels. One idea I had was that we were millionaires. I would spend money we didn’t have on things we didn’t need late at night while everyone else was asleep. Previous to the psychosis, I ran the household finances. Andrew had no idea what was going on – until he did. This financial strain and confusion only added to his stress. Previous to the psychosis we began discussions regarding our potentially needing to move in order to be closer to family. My decline was severe and we were beginning to see that I would need a great deal of help in the support of my recovery. Andrew was negotiating a potential job to that end. There were 2 simple, specific conditions that would allow for us to move. Accepting the job was second only to them offering him a salary that would allow for us to move from a financial standpoint. There was a threshold necessary in order to make that possible for us. Nothing had been set in stone before I suffered the psychosis. The psychosis was the very circumstance forcing Andrew’s hand in terms of our moving. The job he was negotiating was available one month after we moved across state at nearly 50% less than what our threshold was. But he didn’t have a choice. At that point in time it was a necessary decision – the right decision – the lesser of two evils. Talk about stress. Andrew had been put into a pressure cooker on every side of our lives and he didn’t have a partner to go through any of it with. At one point while in psychosis, I shouted at him that he had abandoned me and his daughters. I have no memory of this. I’m not sure why I believed that because he was doing everything in his power to keep us all together and safe. He saw me in a state that I wouldn’t wish on any partner. He confessed to me later, that at one point, he was terrified that I wouldn’t ever be ok. Would he ever be ok? Would his children be ok? Imagine his trauma. Imagine his suffering.
Andrew has long suffered from depression. It is something that he’s worked through over the years through talk therapy as well as medication. His depression and anxiety have been controllable for the most part, but each year around October, he begins to noticeably dip. This is usually when he and I have the conversation that it’s time to start seeing our counselor again, to help us through. I came out of psychosis mid October. He started his new job a week later. There we were, trying to pick up the pieces. Within a few months, Andrew suffered a relapse of his alcoholism. I wasn’t aware of it. I simply thought that he was in the throes of his depression and that it was worse because of our collective trauma. Looking back, I’m surprised the relapse didn’t happen sooner given everything he’d been through.
We had all been diagnosed with PTSD. We began counseling to begin the recovery process. Despite this, he was not ok. I’d frankly never seen him in such a state. He was so distant. It seemed hard for him to be home for any length of time. I thought he was processing what we’d been through and that it was simply hard on him in a different way. I didn’t realize he was struggling with his relapse. By March, we were on lock down. His industry was shut down and he was unemployed again. Because of the year we had had, his unemployment was quite low, as it’s determined by what is referred to as your “base year.” In other words, our quarter was based not on what he’d been earning for the past five months, but rather on the months previous when he took a pay cut and was temporarily unemployed due to my medical emergency. He was now feeling the pressure of the financial burden placed squarely on his shoulders, as I was still not well enough to work. This was his tipping point. The consequences of the pandemic were too much for him. He had reached the point that he was no longer able to hide his alcoholism from me. I tried helping him through it as best I could. It eventually became something I was no longer able to hide from the children. It was at this time that he went to live with his mother to get sober. This was excruciating for all of us…but necessary. We again found ourselves choosing the lesser of two evils.

I understand why Maria admonished me when I told her that I was experiencing feelings of guilt. It’s not my fault. Of course, it’s not my fault. The truth remains that my sickness set into motion a series of events that uprooted our lives and had significant negative impacts not on me alone, but on all of us. C A U S E and E F F E C T.

C O U R A G E and E M P A T H Y:

I am so proud of my husband. He has had courage in the face of a great deal of adversity. Courage to face his shadows and demons. Courage to be honest with himself. Courage to allow himself the space to really experience his own feelings of what happened to him as a result of my sickness. Facing our shadows is never an easy thing to do. To face them honestly and to confront them head on can be incredibly difficult, but oh so rewarding. I’m also proud of myself. Proud of my own courage to give Andrew the grace he needs, helping to support him in his recovery. I’m proud of my courage to no longer be co-dependent and to find the balance between supportive partner and living in a way that meets my own needs. I’m proud of us as parents and partners. We found the courage to trust and to believe in one another once again. We have the courage to love one another through our respective illnesses and recovery, acknowledging that we both have more work to do. We are a work in progress- right where we need to be at this point in time. Andrew is back home and we are doing the work in a healthy, productive way together, as individuals.
Courage and empathy. Empathy is so important. Putting yourself in another person’s shoes without prejudice. Without bringing your own experiences into it. Pure empathy. When we’re able to do that for one another, we are able to accomplish so much more for each other. Finding a balance when you’re an empathic person so that you’re not carrying the things that don’t belong to you can be challenging, as is the case for me. I am grateful for my natural tendency to be sensitive and empathic in terms of my relationship with Andrew. While finding the balance has been challenging, I’m not sure we’d have made it through this season without it. Conversely, his ability to have empathy for me and my own struggles; my physical limitations in particular, is vital. When he meets me in that space, it makes all the difference in the world – for both of us. We are still here after all, and for this simple truth, I am filled with an abundance of gratitude today.



Psychosis, pandemics and the killing of peacocks.

We were so very lucky. We lived in a quaint little town, in a picturesque neighborhood not far from a very large, beautiful park. The park boasted gorgeous grounds, including large trees, rows of rose bushes, a large pond for ducks and of course, a section for all of your typical park toys for children. Our favorite part (aside from the toys) was the very large, elevated gazebo and the aviary. The Gazebo was always a thrill for my small children to climb up to. They would practice all of their dance moves, while pretending that they were on a real stage. I was the adoring audience, of course. Not far from the gazebo was the aviary. This was the most thrilling and we visited the site often. It was a wonderful and educational experience. The aviary contained all sorts of species – both land dwelling and waterfowl.  Among all of these however, our most favorite were the majestic peacocks. They were truly magnificent! From the time my daughters were 2 years old up until their 5th and 7th year, we visited often. The peacocks were our friends. They were a source of great joy. On a hard day, it was a very easy thing to put our coats on and walk over to see our peacock friends. All was set right then. What a glorious way to grow up! This mamma’s heart smiles brightly looking back on it now. Yes, we were so very lucky.

A little over a year ago, I suffered a significant relapse with my multiple sclerosis. It was the first relapse that we were aware of since the nearly 5 years prior, when I received the diagnosis. It became clear I was having a relapse at the end of July, 2019. I already had the annual appointment scheduled with my specialist in Seattle for October, but knew I needed to be treated as soon as possible for the symptoms and to hopefully slow any further progression of the disease. I wasn’t able to get in to see my local practitioner until August 16th. By that time, I was only able to walk with a cane. I had not had feeling in my feet for a month but it had now moved to my legs to a serious degree. I wasn’t able to lift them without using my arms. We had realized at this time that I had also been suffering from some cognitive decline. Little things were happening such as, my getting numbers confused. My inability to process fully at work a month earlier wasn’t noticeable to anyone else besides me and a couple of friends whom I shared my concerns with.  I could lean in to them for support, until my feet and legs gave out. At that point, I couldn’t quite get through any longer –  no matter how much support my dear colleagues were willing to give. I had to make the decision at the end of July that I was no longer capable of working. We arrived at the clinic for my appointment. Of course, Andrew was with me. I wasn’t able to drive in my condition and this was scary for both of us. When they took me back for the exam, I couldn’t even lift my right foot up to the height of the scale. I was completely unable to move it. My left leg was in better shape, so I handed Andrew my cane and tried with my left foot as I held on to him for balance. I was then able to pull my right side up with my arms, as well as with the help of my husband. That moment sits with me sometimes. It sits with me in a strange way as if I’m looking at myself through the eyes of someone else. At that moment, I was honestly quite positive and feeling hopeful. This makes me smile now. I had no idea how bad things were and how much worse they were going to get. The fact that I was suffering from a relapse was self evident, but my practitioner went through the standard, basic neurological exam and asked all of the questions one would expect him to ask. As is prototcol and as we expected, he was going to start me on steroid therapy to address the symptoms and hopefully slow the progression of the disease. We discussed the need for him to communicate with my specialist in the hopes of moving up my annual appointment. We were all in agreement. I was put on an extremely high dose of oral suspension prednisone (1,000 mg ). This is a standard dosage for an MS relapse. When administering steroids in the form of an oral suspension (prednisone) vs. steroid therapy administered via i.v. Infusions, a patient should not ever be on such a dosage for more than 3-5 days. There are several risks in the 3-5 day range including causing a person to go into psychosis. A person on this level of prednisone must be monitored closely because of the risks. My symptoms were improving after taking the prednisone, but as I began to taper down, my symptoms were worsening again. At this point, I was partially paralyzed (bilaterally) from the feet to the chest.   At the follow up, my practitioner wrote another prescription for the same high dosage of prednisone. In other words, he was going to continue me on the high dose for an extended period of time, instead of moving me to the more favored approach of i.v. Infusions. Of course, at the time, Andrew and I had no idea that it wasn’t a safe method of treatment. We also believed that my specialist was well aware of my treatment plan and in communication with my hometown practitioner. This was not the case. My neurologist had no idea that I was in a relapse state and never would have approved of the approach in treating my symptoms. We didn’t learn any of these things until much too late. I was on the high dose prednisone for 10 days. 

During this period, my husband was in a dynamic role at a job he loved. He once again, had to leave this job abruptly so that he’d be available for me and the girls. This was the same choice he was forced to make less than 5 years earlier. The same day he informed his employer, he learned that his hard work there had paid off. The product he’d represented had been accepted to receive placement  into Whole Foods Markets. He had been working on that account for 9 months! A goal he’d  worked so hard in achieving and now..poof! Done. He had to take a job back in a restaurant that he was overqualified for, with yet another pay cut. You see, when a spouse becomes chronically ill, the burden that one’s partner carries runs deep. I’ve seen this in my husband and my heart aches for him. I’ve gone through periods of feeling tremendous guilt. I get through these feelings and move forward from them, but the guilt sometimes revisits me. He never complains. He has not once ever  complained.

At first, it was difficult to determine if I was experiencing your garden variety “roid rage” or something more. As Andrew now recalls, there were so many moments where I appeared to be lucid if not hyper-aware and somewhat irritable. One thing was certain; I was not his wife. Not the person he knew me to be before the prednisone. There are, in fact, support groups for the partners of people who are on high dose prednisone therapy, as “roid rage”  is a very real thing. The amount of steroids I was taking and more importantly, the duration for which I was taking it, caused very obvious personality shifts. It had become more than that in my case. I had experienced a psychotic break. I was completely manic and there was nothing anybody could do to stop it. Anyone who truly knew me at the time, knew something was very wrong. As a result of a few of my Facebook posts and emails I sent, my sister in law called my husband to inform him that she was coming over right away. She left her three children and her other responsibilities to be with us and to help us navigate through what was as of this day, the darkest period of our lives. She drove 7 hours without notice, without being asked, to love and support us. She has been a true example of what love looks like. I was on top of the world! I thought me and my family were headed to paradise. I told my children repeatedly that we were going to paradise. In truth, my children were headed to Vashon Island to be with my sister in law and the rest of their family, while I was being driven straight to Harborview in Seattle. We had to go to the city, several hours away from our home, because the medical professionals in our quaint town were not equipped to care for me. The only way to stop the psychosis was to get me off of the prednisone. Taking me off of the prednisone would likely cause me to go into limbic failure which could be fatal. Our only option was to wait it out. Taper down the prednisone slowly and wait for it to get out of my system. Then, I’d need to recover from the trauma my brain experienced as a result of the psychosis. We were stuck between a rock and a hard place. We had no choice but to leave and get me to a place where I’d be cared for. I didn’t understand on any level whatsoever what was happening when we arrived at our destination. I believed wholeheartedly that we were on our way to paradise; a paradise that I had conceived of in my state of psychosis. Perhaps this supposed paradise gave my children some hope and stability during a time where there was very little of either of those things. Perhaps the non-existent paradise was a gift to me as well.  I believed we were at the hospital to address my M.S. relapse when in fact, we were there to address my prednisone induced psychosis. I continued to believe that even long after my discharge. The hospital story is another one in and of itself. The process was long and hard. I would not have survived it without the help of life long friends and family who dropped everything to be there with me and love me no matter how awful I was to them. A person in psychosis can believe, say and do terrible things. Nothing I could say or do mattered to those who were there for me. Those who know and love me knew that it was the sickness. The trauma that we all experienced as a result is difficult to put into words. I didn’t understand that the day we drove out of our driveway, leaving our sweet little neighborhood in our quaint little town, that we’d never be back. I thought we were headed to paradise. I was instead separated from my darling girls and sent to the hospital. Friends packed up our home and we were moved out before I was ever even awake and clear headed. By the time I was more clear headed, the U-haul was pulling into our family driveway. From there we headed to our new house. The gravity of loss..the degree of what was lost once the prednisone was out of my system and I was no longer in psychosis, is something that is difficult to articulate still. My book will go into more detail on the subject matter. 

The last week of October, my 7 year old daughter wrote me a letter during her writing class in school. It read, 

Dear mommy, I love you so much. I know things have been hard right now, but when our house is unpacked we will have the best life ever!! I promise.”

As I read her letter the tears ran down my face, she squeezed my hand. I looked down at her face, tears rolling down her sweet, rosy cheeks. Yes, we were going to have the best life ever! We always had. We had so much love! Things had been difficult, but we were going to rise above. Less than five months later, we found ourselves in the middle of a pandemic. Everything was shut down. I must say, in the beginning, the  shutdown was a gift to our family. My kids needed to be home with me more and feel secure in the knowledge that I was recovering from my multiple sclerosis relapse. Being together was incredibly healing for all of us. 

A couple of months after the shutdown, I was reading the news after the girls had gone to bed. It was terribly sad news. Someone had broken into our old park’s aviary, killing the peacocks. Killing our dear, sweet friends. I cried myself to sleep that night. Another loss. Who could possibly do something so terrible? Who could hurt such beautiful creatures? I would not tell the girls. They do not know about the tragedy to this day. They don’t need to suffer another loss. I will carry the sorrow for the killing of the peacocks. I will carry it for all of us. I woke up from the prednisone induced psychosis to the reality that I’d lost my home, my job, my future dreams for a particular life in a particular town, and the life I’d built for my daughters. The pandemic felt easy in comparison to the months leading up to it.  It felt like an opportunity to heal from all of our losses. The peacocks felt symbolic of losing the life we were forced to leave behind as a result of my sickness. I’ve mourned the loss of the peacocks. The  mourning for the loss of the life that I thought was mine will take a little more time. I grieve a little bit every week. I take a quiet space in time…even if it’s just for a few minutes. Children are so resilient. My children have days when they struggle with our loss and for what they miss, but we’re making beautiful, new memories here. The more memories we make here and now, the easier the memories that we’ve made in the past will be for us. Instead of tears over those things we miss, we’ll smile at the thought of those memories and recognize them as gifts. Gifts we’re so lucky to have been given. I’m ever grateful for the life I was able to live and for the life I was able to give to my girls. The life that we have before us here and now, is yet to be determined – but one thing is certain – it will be just as wonderful. Like the peacocks, It will be magnificent and majestic.  We will make it so. Yes, we are so very lucky.

A new day

I had meant to write a very specific post 8 days ago. It hasn’t happened because well, life is sometimes that way. There are days where it seems that no matter the unexpected “stuff” thrown my way, I’m able to glide through whatever it may be and accomplish all I set out to accomplish. Then there are the other kinds of days. The opposite kind of days. There are any number of reasons for these, but it seems this past week has been so much more that way. I’ve not been gliding by any means. I’ve been stumbling over my own feet (literally), my children’s feet (sometimes) and my husband’s feet (figuratively). Every single thing this week has felt so much more difficult. Even the most simple, every day tasks. So, how do I overcome these periods? Truth be told, I’m not entirely sure, as it’s not just one thing. Sometimes it’s a combination of many things. Sometimes those things don’t necessarily work. Here’s the conclusion I’ve recently come to: Maybe there’s nothing to do. Stay with me! Maybe the best remedy to these types of days, weeks, or even months, is just to let your body and mind feel what it needs to feel without trying to force it to do what it is you perceive it as needing to do. I’ve recently found, that when I let go and allow this to happen. When I allow my body and mind to just go through it, no matter how difficult and painful it might be. No matter how off course I feel it’s put me….the intentional act of letting go so that I can simply go through it, is truly a beautiful thing. Going through something means that there is another side to be found. When I allow myself to just go through it, I’m always surprised at the gifts I find on the other side.

This past week I’ve had personal struggles that I’ll share more about in my book chapters. Additionally, I’ve been in a prolonged flare state with my M.S. which causes a whole host of challenges. Lastly, I’m feeling anxious about the election. I think that many people are. I’m a sensitive person and this election has felt much different from any that I’ve experienced in my lifetime. It has affected me. So, I’ve moved through these things. I’ve allowed myself to feel all of the emotions and unapologetically so. I’ve allowed myself to, once again, accept the fact that my life is not what it once was and does not feel normal. It is in fact, my new normal. I’ve allowed myself to find a quiet place alone, to grieve this fact. To grieve the loss of my old life; my old normal. This week I gave myself permission to teach my children less and play with them more. I gave myself permission to get less housework done because I just couldn’t. I went through all of these things, and while going through them, I found something inside of myself. The things I find when I allow myself to go through the “stuff” that often doesn’t feel good are the things that always turn out to be gifts in the end. Regardless of what I learn about myself; the good, the bad or the ugly, it’s such a lovely thing to become more aware. This helps me to be the best version of myself that I can possibly be. So today, I’m grateful that I’m going through “stuff”.

On another note, my intention 8 days ago, was to write a little something about my reasons for starting a blog. I have actually begun the process of writing a book. I’m already a few chapters in. My first post here, “We were so happy- Part one” is a rough draft of the first chapter. I thought that a blog would be helpful in terms of my future goals with that endeavor, but that it would also be cathartic. As I considered this more carefully, I came to the idea that I’d like to create a community of support and love for others.The theme of my blog is rooted in those ideas. Thanks for reading!
In gratitude always, Trish

Early Morning Sunday thoughts

For some reason, I woke up early this Sunday morning. I hadn’t planned on writing until after my daughters were asleep tonight, but then I thought to myself, It’s so quiet. A beautiful quiet! What a perfect time to write! So, I did and I was so happy with the end result….but just as my daughters were waking up, I somehow tapped the wrong thing and lost everything I’d written with the exception of the title and the first sentence. So here I am, trying not to feel too upset by it. Trying to recreate what I’d already written which seems so silly now, as my daughters are up and at ‘em. For context, my closing paragraph included my hope for you, which was that you’d be able to find the beautiful quiet at some point in your day. Acknowledging that the beautiful quiet would be the first thing that I’d be grateful for today. I’m laughing now! Not so long ago, this development would not have me laughing. I suppose I’m learning to let go. Perhaps that can be the second thing I choose to be grateful for today – The ability to let go. As far as my original, early Sunday morning post, much of the content was important for me to share in terms of how I came to and what my purpose for starting this site is. I’ll get to that at another time. Maybe while my girls are sleeping tonight, which is when I’d originally planned on writing to begin with. In the meantime, my hope is still that you might be able to find some beautiful quiet today and that any challenge you face be small enough that you’re able to find the breathing room to let it go.

Joy and grief can live together…

This picture brings me both feelings of great joy and grief all at once. I had recently suffered a severe multiple sclerosis relapse. It had been weeks since I’d been able to participate in the Farmer’s Market with my daughters, which was something we actively participated in every Saturday. It was difficult and painful for me to get there. I was slow and needed my cane – but I made it! The joy that this small act brought my girls was everything to me. I felt light for the first time in months. The bliss of ignorance is seen in this photograph. Little did we know, that only days later our lives would be completely upended. It’s in that space where I feel the grief. Time is such a gift, in that the sting of the grief isn’t quite so overwhelming anymore. It’s still there, but less so. It was not very long ago that I wasn’t even able to look at this photo and now, it makes me smile. Yes, time is a gift. Allowing space for grief within the joy is also a gift ~ a gift I am so very grateful for.

We were so happy ~ Part one.

I was half awake and couldn’t will myself to open my eyes. I wasn’t ready to move my body. I heard little footsteps walking up the stairs and into my room. I still couldn’t open my eyes. My little cherub of a daughter put her face close to mine and whispered, “Maaaawmaaaaaw, it’s a wondooful daaaaayaaaaay!” Before I could respond she said, “The woostuh said, cock-a-doodle-doohoooooooh!” Well, how could I possibly stay in bed then? She had given me the will to move my body, just like that! Imagine having done nothing at all apart from waking up in the morning and already knowing that it was a wonderful day!  It was that very thing that kept me moving forward at a pace that as I look back on it now, seems truly unbelievable

Three years earlier, I was pregnant with that little cherub of a daughter when my husband, Andrew, received a job offer too good to pass up. He was offered a position as a Corporate Chef for a winery.  The move would also land us in a great city not only to raise our family, but it was also a place I’d long imagined living some day.  It was a sweet little town with great opportunities for me professionally as well. After all, the girls wouldn’t be babies forever! The decision seemed obvious. So, at 38 weeks pregnant, me, my 18 month old daughter and husband moved across state. We were thriving!  Andrew was loving his job and I was loving being a momma to my sweet babies. As expected there was opportunity for me. Sooner than expected, I went back to work as an events coordinator for a company who owned multiple wineries. It was ideal in that I could do much of my work from home, needing only to leave the children when we had on site events and when I had meetings with prospective clients. We acclimated quickly and very well. It was a dream! We were beginning to plan our long term future with our family. Things were starting to come together in all of the ways we’d hoped. At the rate we were going, we would likely be able to buy a house within 3 years. We were so happy!

One morning in November, the baby woke in the middle of the night. She was 8 months old and had caught her older sister’s head cold, so sleep wasn’t a thing that week. I went to get her out of her crib and grabbed all of the things I needed to comfort her, including the book “Goodnight Moon” by Margaret Wise Brown. When I got to the page with the “three little bears sitting on chairs”, I realized that I was seeing double. I saw 6 bears in chairs! I rubbed my eyes and tried squinting, which didn’t help much. I chalked it up to being tired. This went on for about a week, but usually resolved after being awake for a couple of hours in the morning. I thought that I was just so tired from having two sick babies, that I was literally seeing double. I mean, the expression came from somewhere, right? A couple of weeks later, it wasn’t resolving and it seemed to be lasting longer throughout the day than before. I was still so incredibly tired though, so I thought it was as simple as that. I was just tired.  Thanksgiving was just a few days away and I had decided if my vision hadn’t improved by the end of the holiday weekend, that I would call my doctor. We had Thanksgiving with our dear neighbors that year. The host happened to be a medical doctor. I told her about what had been going on with my vision and she urged me to call right away on Monday. She suggested calling the eye doctor to rule out anything simple first. I went for my appointment a few days later. The eye doctor could find nothing that would explain my symptoms. He referred me to see a general practice PA. I didn’t have an established physician yet, as we’d so recently moved. I saw the PA a couple of days later. When he heard I had a family history of Parkinsons and chrohns disease, he ordered an urgent MRI. I went in for the MRI 2 days later.

The morning after the MRI, I felt unwell. I was terrifically off balance and my entire head felt pain. Not my head like a headache, but literally my entire head –  as if it had been chopped off. From my face to the back of my neck. I was feeling pins and needles, stabbing pains and burning pains. On top of that I was feeling off balance and dizzy. There was a heaviness in my legs that reminded me of my marathon training days. It was as if I had gone for a long run after taking a break and woke up the next morning to the feeling of having done too much. I walked down the hall of our bedroom after waking up. My husband was at the end of it. I met him there, wrapped my arms around his neck as he held me and whispered in his ear, “baby, there’s something wrong with me.” Tears we’re quietly running down my face. He asked what was wrong but before I could answer, the phone rang. It was the doctor’s office. It was my practitioner. Andrew handed me the phone. The clinic wasn’t even opened yet and he was calling me personally. I was convinced I had a brain tumor. My heart was in my stomach and I was trying to sound even in tone when I said “Good Morning” from my end of the phone, in my most pleasant voice. The doctor informed me that they found multiple lesions in my brain and that it was pretty clear that I had multiple sclerosis. He explained that I’d need to come in that same day if possible for some blood work as well as to schedule another MRI for the spine. He’d sent in a prescription for prednisone that I’d need to start as soon as possible to help slow the progression of the disease and help with the symptoms. He’d also sent my information to the neurology department and they were expecting my call, as I’d need to make an appointment with their office as soon as possible so that we could begin treating the disease. My husband and I sat next to each other in silence for what seemed like forever. It was likely only a couple of minutes. We had an almost 9 month old and a two year old fumbling around and waiting for breakfast so it can’t have been long. We proceeded to do the things we needed to do that day in a robotic way. We could talk more after I actually saw the doctor with all of my questions. In the meantime, he’d go to his demanding job and I’d put on a smile for my babies and love them as best I could while trying to coordinate the last minute childcare I’d need in order to get to the clinic for the various appointments. I’d know better what to do after I got through them, I was sure.

I sat in the waiting room riddled with anxiety, waiting for them to call my name. I was in a trance of my own thoughts, too many to even list here, that the sound of my name almost startled me. I went back to my room and the wait there was even worse. I mostly thought about my girls. The doctor tapped on the door and stepped in. He went over the information we’d discussed over the phone earlier in the morning. He showed me the MRI results and said that it appeared that I’d had the disease for quite some time, as there were several older lesions. He then pointed to the “active” and newer lesions. These were the areas that were causing my current symptoms. The more brightly lit and the larger they were, the more inflamed or the newer they were. It was easy to see. He had ordered a blood test, as the blood will generally also have a marker that indicates a Multiple sclerosis diagnosis. In order to legitimately diagnose M.S., there needs to be 3 diagnostic factors, though as he explained, based on the MRI, there was really no doubt between himself, the radiologist and the neurologist that it was almost certainly M.S. He had also ordered another MRI to be done the following week. This time it was an MRI of the spine. He gave me the numbers to call for the MRI appointment. I needed to contact the billing department as well as the scheduling department. They were expecting my call. The nurse ushered me to the pharmacy which was in the lobby. Thank goodness for this small thing. I wouldn’t have to drive to the pharmacy. One less detail to worry about. I had the prednisone in hand which would hopefully stop the symptoms and slow the progression of disease. They took my blood and I was all set to go home and begin the process of making appointments. I’d need to completely reschedule my entire life for the next couple of weeks. I had a little extra time to think about all of these things while I waited for my childcare provider to pick me up. I wasn’t able to drive myself to the appointment as a result of the vertigo and head pain. I was both grateful and gutted. So glad to have a wonderful person able to help in so many ways, whom I trusted with my children; but also, quietly devastated that I wasn’t able to drive myself. Fiercely independent and schedule oriented, it was difficult for me to let go. It was difficult for me to let go in my mind, at least. It seemed easy for my body. My body had given up for now. It needed a break. It was screaming at me to please give it a break!  My body decided that the choice was no longer mine.

The high dose oral prednisone was working, but as soon as I started to taper down, not only did the symptoms return, but they were worse than before. I began experiencing so much pain in my feet, it was difficult to walk. The doctor decided I should be given I.V. Steroid infusions instead of the oral suspension. I needed to go in daily for 5 days to get these infusions. They made a big difference for me and the symptoms began to subside. Within a few days of finishing the infusions, I began to decline again. Much like the first time I had tapered down with the oral prednisone, I began to feel worse. On Christmas, we tried to celebrate with our sweet young daughters as if all was well. I tried desperately to be positive not only for them, but for all those in our lives. It helped me to be THAT person. The one who looks on the bright side and remains hopeful and positive. I was convinced that this would help to determine a successful path for me in my healing journey. Our Christmas was sweet. We had a darling 9 month old and a 2 year old. How could it be anything but sweet under those circumstances? I was not steady that day. I was feeling weak and was experiencing muscle spasms, neuropathic pain and intermittent vertigo.  Andrew had a tradition of making us eggs benedict for Christmas breakfast.  Mimosa’s were also always a part of our Christmas brunch. I joked with him that I may as well have 2 since I hadn’t even had one and already felt slightly tipsy. Why not let it all loose for the Christmas holiday and forget our troubles? I had half of a mimosa and called it good. After brunch we called the clinic. It was decided that I’d need to be seen the next day. The 26th of December, 2014,  I was told I’d need to do another round of I.V. steroid therapy and that hopefully it would stick this time. The treatments were to begin the following day. My husband still had an incredibly demanding, new job. An important job in terms of his career. We had a 9 month old, a 2 year old, and I still wasn’t able to drive. Now, I needed to figure out how I was going to get to my infusions for the next 5 days and also coordinate childcare. The irony wrapped up in all of that is that at all costs I was told to avoid stress. Anybody who has gone through an unexpected and life changing diagnosis understands how ridiculous that directive is. Being in that situation is inherently stressful.  This is an unavoidable truth.  I cannot tell you how grateful I am that we had the neighbors that we did. We had lived there for less than a year and not for the grace and kindness shown by our friends and neighbors we would not have made it through this ordeal.  I was driven to and picked up from every single appointment by a dear neighbor, so that our nanny could be with the kids without disrupting their schedules. It was all hard enough on the girls as it was. As a result of the infusions, I needed to keep a heparin lock in my arm wrapped with medical tape to secure the tubes. That was a bit scary for Charlotte, my 2 year old. That and the fact that I was obviously sick. I was not the momma she was accustomed to. Before getting sick, I was always high energy. We went outside daily, rain or shine during her first 2 years on earth. Now, I struggled to walk and limped terribly. Everything seemed a laborious chore. I tried to hide that from her, but children know. They always know. One day as I was walking towards the bannister to go downstairs, Charlotte came to me and gently took my hand. She looked up at me with her twinkling, concerned blue eyes and said, “ It ok, mama. I help you!” She was worried. She wanted to take care of me. It made her feel better when she could be a big girl and helper.  As for my Georgia.  My sweet baby. I had to abruptly stop nursing her. Between the MRI contrast given and the medications I needed to follow, nursing was no longer an option. If I had known the last time I would nurse her, would be my last time – our last time – I would have nursed her and held her a little bit longer. Every time she’d reach for me and I had to reject her was absolutely crushing. Heart wrenching. Even writing it now, the grief wells up inside.