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.
Thank you for sharing your story. I am glad you are improving and writing a new chapter.
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You have all been through so much! I am glad you are here, and looking forward to all the memories you’ll make here! ❤️❤️
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