Wednesday, September 6, 2017
“How was your summer?” everyone asks. I don’t even have words. I legitimately don’t know how to answer that question. So I say, “It was fine, how was yours?” But our summer was anything but fine. The farthest thing from fine ever.
This summer, Ben and Jonah began aggressive treatment for Lyme, PANDAS, and every bacteria and infection in between. We knew it would be tough, but we were up for the challenge. Until that challenge chewed us up and demolished us and spit us out, broken and scarred.
The past three months have probably been the most anxious, stressful, and terrifying months of my whole life. The boys did not react well to treatment. Their bodies could not detox, so they were effectively being poisoned from all the things we were killing off with medications. Their brains became super inflamed and their behavior and emotional problems escalated to a level we have never seen. I called the doctor a few times a week, asking if this was really the treatment we should be doing. Was this normal? The doctor kept reassuring me to stay the course, this was to be expected, things would improve. He didn’t know when, but they were sure to improve.
Turns out, the doctor was wrong. Things just got worse. The boys raged for hours and hours every day, incapable of being calm because there was a wild fire in their brains. Their OCD skyrocketed, and they would get stuck in a mental loop with thoughts they couldn’t get rid of. They said they couldn’t continue to live like this. They said it was too hard. They begged me to make it all stop.
I would rub their backs as they lay on the floor, writhing in agony because their bodies were betraying them, and I would take their tear-stained cheeks in my hands and look into their eyes full of pupils and tell them everything would be ok. We would get through this. I was here, I’m always here, I will take care of them. I will help them.
I held in my own tears as my heart broke, day after day, watching my boys struggle like never before. I couldn’t believe this was our life. We couldn’t do anything “summery,” like take a vacation, visit grandparents, go to the beach or the pool. We had to stay home. We had to be in an environment where I could contain the Crazy. I felt badly for Ella and Aidan, because on especially bad days, they couldn’t have friends over, and I couldn’t take them anywhere. I had to be on watch constantly to make sure nothing terrible happened to the boys while they went through their own private hell. We were all being held hostage by the Crazy. We couldn’t keep up with weeding the garden, or cleaning the house, or seeing friends. Many weeks it was a miracle if I could get to the grocery store. There were many times when we thought we would have to call 911 because we weren’t sure if we could deal with this level of Crazy. But we knew that if the boys were taken to a hospital, our treatment plan would not be followed, our parenting choices would possibly be questioned, and the boys would be pumped full of psychotropic meds when what they were really struggling with was physical illness, not a mental one.
How did we get here? How could this possibly be our life?
One day we were supposed to have family over. One of my boys spent the entire morning raging inside his mental prison cell of OCD. He was rolling on the floor for hours, screaming until the veins in his neck bulged, crying, swearing, saying he was going to kill himself. All I could do was be with him. Assure him that we would be ok. I didn’t know how, but I would fix this for him. We couldn’t prepare for our guests. We couldn’t clean, make the house pretty and cozy, come up with and set out appetizers or special drinks. We were living minute to minute in a type of insanity we had never experienced before.
When our family arrived, my boy pulled himself together. He behaved pretty normally. We ate. We talked. But inside I was a shell of myself, completely depleted by bearing witness to my sons’ endless, desperate struggles. I tried to pretend everything was fine and it was just a normal weekend and we were having a lazy afternoon with guests. But I was wrecked. We had no idea how to even tell people what was going on, because there are no words to describe it, and sometimes people don’t believe it when we do let them into this hellish horror. When I talk about the Crazy, I do it with a calm voice, matter of factly. There is no way anyone else can even grasp the level of terror that living with PANDAS can create, unless it’s your life too. It’s like having grown up in Africa: no one else can truly understand what it was like unless they lived it. I can tell stories about it, show pictures, but if you weren’t there you’ll never be able to grasp what it felt like, smelled like, looked like. It’s not a criticism, it’s just a fact.
Having to deal with the Crazy that is PANDAS is similar to living with abuse, or addiction, I would imagine. You try your best to function, to hide what the reality is. You try to stay strong and not let on how bad the Crazy actually is. You do your best to hide the wounds, the weakness, in this case the rages. But the stress eats away at your body, mind, and soul, leaving in its wake a mountain of PTSD, a burnt out body, ferocious anxiety and fatigue. You cannot even believe you are in this place; how did things get to this point? You are a good person, a good parent. How could this possibly be happening to your family?
A friend and I were talking about “compassion fatigue” the other day. Wikipedia states that “Sufferers can exhibit several symptoms including hopelessness, a decrease in experiences of pleasure, constant stress and anxiety, sleeplessness or nightmares, and a pervasive negative attitude.” Yes. All of this. Times a bazillion.
Compassion fatigue. What a perfect term. Friends and even family can find caring about someone with a chronic illness to be too much, so they may distance themselves from the sick person. But as a Mama of four sickies, I don’t have that option.
The extreme emotional toll this stressful summer took on me just completely undid my heart. I was so fragile, anything could make me break. When our friends, Ella’s dance teachers, gave me a heads up about the class schedule this fall just a bit before it was made public so that I could figure out our therapy schedule, I broke down in the middle of the dance studio. I was so touched by their kindness and compassion towards our family. When friends texted to see how I was doing, it brought grateful tears to my eyes. When my parents emailed their support, sometimes several times a day, or my brother called to chat, I felt my wall of strength crumble into vulnerability. This Crazy. It changes you.
As the stress rolled over me every minute of every day this summer, I put on my goggles to see through the thick fog of fatigue that enveloped me. I tried my best to muscle up my compassion, empathy, and hope for my boys, because I could see they had lost theirs.
Finally, I called our doctor and informed him we would not be continuing with this particular treatment for my sons. We were going off all the meds he had prescribed and together we would come up with a new plan, because I refused to watch my children writhe on the floor with suicidal OCD one more minute. And how would they possibly go to school in just a few short weeks? Enough. I had given this line of treatment a chance, and it ended up to be the most horrifying thing we’ve ever gone through. Enough.
The doctor agreed. As doctors do when faced with Mama Warrior who has her own opinions about the health of her children. We got off all the meds the boys had been taking, and started a new regimen, very very slowly and gently. In the meantime, I took the boys to see another doctor who has a reputation of being “cutting edge” when it comes to treating Lyme and PANDAS. He agreed that since the boys did not do well with all the pills they had taken over the summer that something else needs to be done. So we will be trying an IV treatment in a few weeks that boosts the immune system and helps the body fight off all of its attackers. The treatment is called Ozone Therapy, and has been used in Germany for decades. More and more, I wish I lived in Germany. I keep hearing about all the amazing advances they have made in treating the illnesses our family struggles with. Maybe I need to get us all new passports.
IV treatment may seem radical, but at this point, we’re desperate. Pills don’t work to quell the boys’ symptoms. Although they are doing much better since going off the medications of the summer, they still have flares where rages take over like a freight train and are impossible to stop. The boys have just a few short years before they will potentially be out in the world on their own, so the clock for healing is ticking. If Ozone Therapy does not work, we have a Plan B, which is IVIG- another IV treatment. My sons are furious that they have to go through IV treatments, as any teenager would be. But then we talk about how much they are suffering, how sick they are, how we cannot contain their symptoms at a manageable level and the entire family is suffering because of it…and this is just what we have to do at this point. There are not a lot of options left, and the boys are very ill.
I don’t know what the future holds. But I do know that even though I’m wading through a sea of compassion fatigue that makes me want to quit fighting, I will never stop battling these illnesses until my sweet babies are all healthy and happy. I will stand with them as they suffer, because it’s all I can do. Even when I want to quit.
This summer has left me shaken and haggard. I feel like I’ve aged 20 years in three short months. So I’m trying to rebuild my own health and buoy my soul. I try to get to yoga- the restorative, slow kind for people like me who are not exactly yogis by nature. I cut up lemon and put it in my water every day. I walk the dogs and revel in the chill in the air that Fall is bringing. I try to eat clean, nutritious foods. I try to do something every day that makes my soul sing. Sometimes I’m better at all this than others, but every day is a new beginning and I just keep trying.
So that’s how my summer was. I don’t have a short answer for, “How was your summer?” Someday I hope to be the Mama whose response is, “It was so great, we did so many fun things, the kids are fabulous, we’re all just fantastic!” And not think instead about compassion fatigue and PTSD and sleepless nights. Someday.