No Shame

I’m wired such that if something feels good than more of it will feel better. Lately I’ve been looking into alternative ways to deal with the pain. I got one of those shiatsu back massagers you can put on a chair. I brought it home, put it on the chair, and didn’t get up for about 90 minutes. It felt so good to have those knobby things kneading my back. When I did get up I noticed that my back was hurting more than usual. The instructions said you should use it for 15 minutes.

So my back was already compromised to begin with, and I made it worse by digging into it for too long with the massager. But that wasn’t enough. I’ve been getting massage and the masseuse has been using those cup things on my back to suck out the bad stuff. I really like the sensation and it helps with the pain. So I picked up some of those cups to use at home. I just began putting them on the painful spots and moving them around. I left them on for longer than advised, of course. After that I could barely walk. Yesterday was slightly better. Today again, slightly better but I am mostly immobilized due to the pain. I will likely have to spend most of the day flat on my back. I tell myself it will pass, just like everything else.

I’ve been extremely hyperthyroid for an entire month. Even after a dose reduction, I am still off the charts. This leaves me feeling extremely weak and exhausted. Sweat pores randomly off my body. I’ve developed a heart arrhythmia that happens everyday now. My heart starts beating erratically and rapid. I get dizzy and nauseous. The Rheumatologist ordered a holter monitor that recorded my heartbeat and they tell me its Paroxysmal Atrial Fibrillation. The word Paroxysmal indicates that it doesn’t happen all of the time. On Wednesday I am having an echocardiogram. Luckily I requested a female tech and they had one. The last time I had an echo it was with a dude. He did a really lousy job of covering me while he slid his device all over my chest. My breasts were hanging out and I was super pregnant so they were huge. It was humiliating and hopefully this one won’t be so bad.

Sometimes I think about how similar my health problems are to my fathers. He developed some kind of pain and fatigue disorder. No doctor could tell him what was wrong with him. Then he developed atrial fibrillation. They did multiple interventions but none of them were successful. Then slowly over time he lost the ability to breathe. And then he died. The doctor wanted to do an autopsy to determine the cause of death. I said no at the time because I didn’t see any purpose. I wish now that I would have said yes.

There have been so many times throughout the last 6 years of illness that I wonder how I can feel so incredibly bad and not be dead. Lately my focus has been on trying to create a life that is satisfying in spite of whatever symptoms I might be having. I’ve been playing my guitar. I’ve been meditating. I’ve been trying to let things slide off my back. I’ve been trying to let go of anger. I’ve been putting energy into making my apartment feel more homey.

I know that the most important factor in all of this is my mindset. Can I accept how I feel today, even if I don’t like it, even if I hate it? Somehow it seems that things are better when the answer to this question is “Yes”.

Most importantly I must have a compassionate approach with myself. If I am doing all of these things and still treating myself like I am to blame for the illness or the pain than I get nowhere. The illness happened. Illness happens, even debilitating illness happens in life. It’s a very difficult path and I should wake up every morning congratulating myself for sticking it out. Even though I do things to sabotage myself sometimes, like overdoing the massage chair, the underlying reason is always that I am attempting to relieve unrelenting pain. There is no shame in that.



The Hearing

I called every family law attorney in the small town I live in. No one was available on such short notice. I called Dylan’s P.O and told him what was going on. He asked for the attorney’s name and said he would come to the hearing.

When I arrived a woman came toward me. She seemed like she was in a hurry and was holding her right hand out as she approached. “Are you Jess? I’m Carla Liez, Bird’s attorney. If we can come to an agreement…” She held a stack of papers in her left hand and was looking up at me over her oh-so fashionable reading glasses. She put her hand out and I gripped it hard and then let go.

“I’m not talking to you”, I said, and continued walking toward the courtroom. She made some kind of a flabbergasted sound which I ignored.

I saw Dylan’s P.O. and went up to him. Apparently the attorney and Bird had negotiated a deal with him. Since Dylan was refusing to come home to me, or to return to rehab, they wanted me to agree to allow him to stay at the local  youth shelter. The P.O was urging me to go along with it.

I walked into the courtroom. There was Bird, sitting with her mousey attorney. I took my seat at the front table next to them.

There was all the usual crap that goes with court and then it was apparently Bird’s attorney’s turn. She burst out of her chair and said, “I have to stand up because that’s what I do!”

She began a long narrative that could have easily come off a show like Dateline. It began with the story of how poor Bird had been refused the opportunity to adopt Dylan because the state we had lived in prohibited same-sex adoption. That’s a flat-out lie, but that was her angle. She was playing the lesbian card. One thing that Bird was honest about was that Dylan had called her right after he ran on Tuesday and she had been communicating daily with him. She had lied to me for three days, pretending to be driving around looking for him.

Bird’s attorney was trying to do a whole bunch of things at once. She wanted Bird to be granted legal  parental rights, to be granted full custody and to make it an emergency situation so that Bird could stop Dylan from going back to rehab. She went on and on for a very long time. I wondered if I would get a turn since I did not have an attorney. Bird’s attorney was dramatic in her presentation as she described how Bird had been thwarted at every turn by a controlling, irrational birth mother (me). I did not interrupt as I had learned in traffic court to never speak unless you are spoken to. Finally Bird’s attorney wrapped it up by pleading, “Judge, please don’t allow the court to let this child down!”

The judge took offense (as did I) to the attorney’s suggestion that the court would let a child down and he reprimanded her. Finally the judge acknowledged me and I told him I was Dylan’s mother and I had the birth certificate to prove it. He wanted me to agree to allow Dylan to go to the youth shelter. I told him I wasn’t comfortable agreeing to anything without having an attorney present. It didn’t matter. The judge ordered that Dylan would go to the youth shelter and that I would remain the sole custody parent. The clerk handed me a stack of papers Bird’s attorney had prepared where she had crossed off some things and written other things in. It seemed unusual for a legal document.

The hearing was over. Bird’s attorney was in front of the judges desk, schmoozing, trying to make up for her misstep. I stood up and glared at Bird as she walked by.

Dylan’s court hearing was that day at 4pm.  Dylan’s PO told me that he was going to try to get Roxanne to bring Dylan to the hearing. I drove back to the courthouse about 3:30, unsure if Dylan would be there or not.

As I walked up the stairs I saw him. He was sitting in a chair next to Bird. Someone had cut all of his thick wavy shoulder-length hair off so that no one would recognize him. It was jagged and uneven. His skin had little color to it and he was sick and coughing. His lungs were tight with asthma. I’d never been happier to see him.

Dylan had his court hearing and at his PO’s request, he was given an ankle bracelet monitor. Bird was horrified and fussed about how uncomfortable it looked. I thought the ankle bracelet was a great idea. Now if he ran we would be able to find him. Plus I wanted Dylan to experience the full consequences of his actions so that he might be motivated to change. The PO thought we should  look into a different treatment setting. Dylan was adamant that he was refusing to return to the rehab he had been in. At this point he was not court ordered to do so.

The three of us walked out of the courtroom and Bird started crying, saying she wanted to leave. I’m pretty sure she thought I was going to send her on her way, for good. I probably should have. But I felt like Dylan was in a very vulnerable situation and that we needed to take care of him together. Dylan said he didn’t want to go to the youth shelter, that he wanted to come home.

There was no way I was prepared to manage Dylan on my own. He was volatile and easily triggered. Every few minutes he would beg us not to send him back to rehab, insisting that he would kill himself if he we did. He wanted me to promise him that and that he was going to get to live with Bird. Bird was also adamant that Dylan should not be sent back to rehab.  It was clear to me that according to Dylan and Bird I was still the enemy.

I invited Bird to come and stay with us until we could get things settled. She was hesitant at first but relented and brought her two little dogs as well.  For the next four days, until we could see Dylan’s substance counselor, we tag teamed Dylan so that he was never alone.

During those few days I found Bird to be domineering when it came to caring for Dylan. We disagreed about what time he should be woken up in the morning, and pretty much everything else.  I let her have her way, because I didn’t feel I had a choice. Dylan spent most of the time in his room in bed.  Bird started sitting in there with him and it felt very  clear to me that the division that had been established as Bird and Dylan against me was going to continue. My main concern was Dylan’s comfort and safety and so I allowed everything. I allowed Bird to wait on Dylan as if he was an invalid.

On Sunday I went out for some supplies and when I returned Bird told me that a process-server had attempted to serve me papers related to a separate lawsuit Bird was filing against me in an attempt to get custody of Dylan. Everything that came up over those few days I just accepted without argument. Bird told me that she had already paid her attorney in advance for mediation so that we could come up with a parenting plan and wouldn’t have to go to court.  I said that was fine because at that point I would have said yes to anything just to keep the peace. I had found an attorney but I wouldn’t be seeing her until the next day. So at that point everything was unknown. Dylan still needed treatment, but where? And how were we going to get him there and get him to stay? At that time those were my biggest concerns.

Losing Dylan: Thursday

The next day I received a text from Bird about 11:00 am.

                           Hi Jess, Can I ask you a question?

“Of course,” I responded without thinking.

And then it occurred to me that this text message was nothing like any I had ever received from Bird in the past. For one, Bird rarely, if ever calls me by my name. She would never ask me if she could ask a question, because for her, asking a question signifies weakness. And third, Bird has never used a friendly tone in any of her communications with me.

Would you be willing to let Ian stay with me until we can sort this mess out?

I knew instantly who the text messages were from. They had Dylan written all over them. And I knew exactly what he and Bird were doing but I played dumb so that I could let them bury themselves a bit further.

“I don’t understand” I texted back.

I could visualize Bird grabbing the phone from Dylan. He had probably convinced her to let him text me and it wasn’t going as planned. The next text had an entirely different tone and was clearly from Bird.

I just heard from Dylan. He won’t tell me where he is unless I can promise him I can pick him up and he can stay with me. He’s willing to do outpatient care but he does not want to be put back in rehab. 

Was this suddenly a hostage situation? Let’s see…Bird and Dylan were asking me to agree to not put Dylan back into treatment and hand him back over to Bird. And in exchange, I would get to know where my son was! I was obviously in some kind of parallel universe of Bird and Dylan’s making. Still, I was relieved to know that Dylan was safe.

Bird kept texting me wanting explicit permission to pick Dylan up but refused to reveal his location. I wasn’t complying. The texts kept coming.

He said he ran because the director told him he couldn’t call me. He said she told him that everything had to go through you. He lost his lifeline and bolted. He wants me to take him home tonight so he can shower….rest….and deal with everything tomorrow.

His lifeline?” I recoiled at her use of the word. Suddenly the only person on earth that could help Dylan was Bird? Who exactly was I? Just the person who gave birth to Dylan and cared for him for the last 15 years. Apparently I had just been incidental to the process. My vagina begs to differ.

I called the police and gave them the address where Bird was staying. The officer called me back an hour later to tell me that no one had been there. I called Dylan’s substance abuse counselor and told her what was going on. She told me she had some time if I wanted to come in and discuss what to do next. I took her up on it.

We met and talked. I can’t recall now what was said. By the time we were done it was dark and rainy. I drove home and had just set my keys on the counter when the phone rang. I didn’t recognize the number but given the situation I answered anyway.

A woman’s voice came out of the speaker that I didn’t recognize. She asked for me by my full name. For a second I thought I had been caught by a bill collector.

“This is Carla Liez. I’m an attorney representing Bird. We are filing for temporary emergency custody of Dylan. There is a hearing tomorrow at 11, and you are invited to attend”.

Oh, I’m invited to attend?”, I said, my blood boiling. “I guess you must not look into your cases before you take them on. Did you know Bird has lived in a trailer she pulls behind her truck for most of her adult life? Did you know she is attempting to interfere with him getting medically indicated treatment?!!”

Her voice was annoyingly non-reactive. “You are invited to attend the hearing tomorrow, at 11 o’clock.”

“Oh, I’ll be there,” I said emphatically, and hung up.

Losing Dylan: the escape

Dylan was admitted to rehab on a Monday. That night Bird texted me, worried. She said Dylan had called and told her the rehab facility was horrible. The cook hadn’t shown up for dinner and they had to make themselves sandwiches. Bird told me Dylan was afraid, because many of the other kids in the facility were wearing ankle monitoring bracelets and tattoos.

I had much more faith in Dylan being able to navigate rehab than Bird did. Dylan made friends wherever he went. I suspected Dylan was embellishing the story trying to get Bird to rescue him. But I was also worried. I hadn’t met the other kids there. I wondered if I should have looked into other rehabs.

Tuesday at 4pm I received a call from the director of the facility. Dylan was gone. He’d taken off running when they went outside to play basketball. They had called the police to report him as a runaway. The director told me that all we could do now was wait.

I hadn’t anticipated this, although I probably should have. On some level I must have because it was indeed my worst fear. I called Bird to tell her the news. She was angry. “I knew this was going to happen!” she said before hanging up.

Soon after it started pouring down rain. I imagined Dylan out in the streets somewhere without cover. In all of Dylan’s 15 years I had never felt so desperate and powerless. I called the police and told them where I thought he might be. Surely he would go to his favorite hangout, the place where he got his drugs. The police called me back a short time later. The officer’s voice on the other end said he was at Dylan’s hangout.

“There is no one here that fits his description, Ma’am” he said matter of factly.

Later that evening I drove to his hangout myself. I talked to some of the people there. They all said they knew Dylan, and were surprised to learn he was only 15. No one had seen him for several days. Bird and I were texting back and forth, asking each other if there was any news. Finally it seemed there was nothing left to do except to go to bed.

I slept uneasily and woke to a text from Bird asking me if I had heard anything. There was nothing. Bird texted that she was driving around “blindly” looking for him. It was Wednesday and I spent the day in a state of despair, immobilized. Had I caused this situation by putting Dylan in treatment? I tried to push away the thought that I might never see Dylan again. Suddenly having Dylan home safe, even on drugs, seemed preferable to not knowing where he was.

Dylan was set to appear in juvenile court that Friday, but his probation officer needed to serve him the summons. Bird had the P.O.’s name and number. I wanted to call him to alert him to the situation. I texted Bird three separate times asking her for the information. Each time she responded with a vague response and would not give me the number. It was extremely frustrating. Finally I called Dylan’s substance abuse counselor and she gave me the number.

Dylan’s P.O. told me he couldn’t speak to Bird without my consent because she did not have a legal connection to Dylan. He agreed to meet with me that day at 3 to discuss Dylan’s situation. Because Bird had withheld the information from me, I decided not to invite her to the meeting. She called me right before the appointment and I told her where I was.

I told her if she was not going to cooperate with me, I wasn’t going to include her. She was livid. I held the phone away from my ear when she began raising her voice. “You don’t understand, Jess! This is much more difficult for me because you are the one who has all the control.”

I didn’t care about control at that moment. I wanted Ian safe and back in treatment. Bird had been pulling this kind of shit with me for years, making me prod for answers to simple questions about Dylan.

I began to notice a pattern that occurred over and over again with Bird and Dylan. One or both of them would do something that would be considered bizarre or out of line in any “normal” setting. Take for instance, Bird withholding the P.O’s number from me. If I then made a choice in response, for instance, not inviting Bird to the meeting, one or both of them would get angry at me. Individually or together they would blame me for the entire incident, acting as if their actions had no effect whatsoever on the outcome. It’s like how Bird was supplying Dylan with weed, and simultaneously blaming me as the reason Dylan was using weed.

The P.O. told me that unless we could find Dylan, he wouldn’t be able to serve him. Without serving him, the court would have no power to remand Dylan back to treatment. Things were looking bleak. Time was moving very slowly. I wondered how long this could go on for. It felt like torture.

I began to feel suspicious of Bird. Was she hiding Dylan from me? She had stopped texting or calling me for information about where Dylan might be. I knew that if she didn’t know where Dylan was, she would be frantic. It seemed odd. And then it occurred to me. Bird had Dylan’s phone, the center of his universe. Or… did she still have his phone? Had she possibly slipped it to him during the admission process?

I texted her.

I was thinking this would be a good time to look at his phone to see who he was communicating with most recently

                                 Forgot I had it. I have to charge it

I would do that asap

                                 What’s his pin



My suspicion grew. Your child is missing and you forget that you have his phone? I thought on this for a while, until later that evening. All of the recent communication between Bird and I had been via text. I needed the truth. At about 8pm I called Bird.

It sounded like she was at a gas station or something. I asked her what she was doing. “Oh, I just got done going to a meeting,” she said, nonchalant. Her voice had that softness it gets sometimes. “Maybe she was going to Alanon?” I silently hoped.

“Oh”. I said, awkward. “I just, um wanted to say, or ask…If you knew where Dylan was, you wouldn’t hide it from me, would you?”

“Oh, no. No, I would never do that to you,” Bird replied reassuringly.

Losing Dylan: the intake

Dylan, Bird and I were sitting in the intake office of the adolescent drug treatment program. The intake counselor was asking me questions about the admission when Bird interrupted. She asked the intake counselor, “Does Dylan have to be here?”

The intake counselor told Bird that they couldn’t hold anyone against their will. She seemed confused. In front of her were two female parents and Dylan, who was hissing and spitting like a feral cat. One parent wanted to admit Dylan and the other was trying to take him home. She hesitated and then said, “Maybe we should go talk alone for a few minutes?” nodding to Bird and I.

“Be careful,” Dylan admonished the intake counselor. “Jess is very manipulative,” he said, calling me by my first name.

The three of us went upstairs to an empty counselors office. I sat and said nothing while Bird went on about how she didn’t think Dylan needed treatment, it was only marijuana, etc. Bird wanted to know what Dylan’s rights were. I suggested we call Dylan’s substance abuse counselor, who I hoped would be able to set Bird straight. Luckily we were able to get through to her. The intake person put her on speakerphone. She told Bird everything I had already told her. He needed inpatient treatment. If he refused, when he appeared in court the following week, he would likely be sent back to treatment. Bird never takes my word on anything. But she seemed to finally be getting it that there was no way out of this.

We went back downstairs and Bird explained the situation to Dylan, again. Since it was coming from her he seemed to accept it. I started filling out the paperwork, which was at least 1/2 inch thick. Bird had not brought any of Dylan’s things, apparently assuming she would be taking him back to her trailer.

As I sat filling out the paperwork Dylan would occasionally erupt in anger, calling me expletives. He told the staff I was a drug addict, not him. He told the staff I had been giving him drugs. He told me over and over again how much he hated me, and that everything that was happening was my fault. It was clear that Bird and Dylan were in agreement that I had engineered this treatment experience as some kind of punishment for Dylan.

The admission process took at least a couple of hours. I said nothing to the verbal attacks that Dylan continued to throw at me. I was embarrassed by Dylan’s behavior, both towards me and the treatment staff. By now he had hurled expletives at all of them as well.

Once Dylan understood that there was no escape, he put his cigarettes and lighter on the intake counselor’s desk. Before she could take them, Bird reached her hand out and grabbed them, curling her long fingers around them as she slipped them inside of her coat pocket. As she did so she said, “Dylan!”, as if to correct him for wasting something valuable.

They gave us a tour. Bird kept making disparaging side comments to me about the place. She didn’t like the rules. She didn’t think Dylan should be subjected to the rules. The treatment center was an apartment building that had been converted into a rehab facility. As we walked through, I thought of myself when I was Dylan’s age. I didn’t think it sounded too bad to be housed with twenty co-ed kids who were fellow drug users. I also thought of my own treatment experience, which happened when I was 21.

It was finally time for us to go. Dylan was crying and clinging to Bird, still pleading with her to get him out of there. He hugged her and told her he loved her. He turned to me and said, “I hope you burn in hell, Jess.”

The big solid door of the facility closed behind us. Looking up I saw there were tears in Bird’s eyes. “I feel like we are locking him up and throwing away the key!” she said.

I tried to reassure her that we were doing the right thing. I reminded her that every professional we had spoken to had agreed that this was the right thing. He was safe and in fact, he wasn’t locked up.

Because my relationship with Bird had been strained for many years prior, we hadn’t touched in several years. Impulsively, I hugged her. “It’s going to be OK,” I said. “We will get through this together”.

That night I went home and I remember thinking that if I died that night, I would die happy. I felt like we had just done the most important thing in the world for Dylan. I honestly couldn’t believe we had pulled it off. Finally, there was a chance for him to find himself again.

I had no way of knowing that things were about to get worse, much worse than I had ever anticipated.


Losing Dylan, 3

After I met with Dylan, I began to question myself. Maybe Bird and Dylan were right. Had I failed at my most important job, of being a parent? It seemed clear that the anger Dylan had toward me was not going away, and in fact seemed to be getting worse.

I called Dylan’s substance abuse counselor. I expressed my concerns and our conversation became heated. I was really worried about Dylan. I felt it was time to put him in treatment, but Bird disagreed. I felt as though the counselor had misinterpreted the situation in suggesting that I hand Dylan over to Bird. I wanted to convey to her that Dylan was now being cared for by his primary enabler.

“Bird is buying Dylan weed!” I blurted out. I was scared to say it. I didn’t want Bird to get in legal trouble.

“Well then why haven’t you called the police? That’s going to be a mandatory report to DHS, which will lead them back to you as the source of the information. You should know that Jess, you’re a social worker”.

My heart sank. What had I done? As I mentioned before, I felt complicit and it didn’t seem right to be calling out Bird if I wasn’t also going to implicate myself. Still I felt certain that an intervention was in order. If Dylan stayed in the situation he was in I knew that things would get worse.

I pointed out to the counselor that he was not compliant with the substance abuse diversion agreement we had signed. I wanted him in treatment, if nothing else than to give him some time off of drugs so that he could see himself clearly. The counselor agreed that he needed treatment. However, she warned me about the possible outcomes. The local adolescent treatment center was not a locked unit. Dylan would likely run. In addition if Dylan acted out as he had been doing, he would end up in a detention center. I was afraid of both outcomes. But I was more afraid of doing nothing.

The counselor explained that Dylan’s pending legal charges could be used as leverage in convincing Dylan to stay in treatment. Since the counselor’s recommendation was inpatient treatment, the juvenile court would likely remand him there if he refused to go on his own. She called the treatment center and made an intake appointment for Dylan the following Monday.

I called Bird on Sunday night to give her the news. I told her everything that the counselor and I had discussed.

Bird was not pleased. “I don’t think he needs treatment”, she said. “This is ridiculous. For marijuana? He is just doing what teenagers do!”

“I think he needs treatment,” I said, speaking as evenly as I could. “His counselor thinks he needs treatment. If he doesn’t follow through with the counselor’s recommendation, he will be expelled from school”. I told her about the intake appointment.

“What if I don’t bring him there?” Bird replied.

I was prepared for this. “Then you will be seen as interfering with medically indicated treatment.” I said, parroting the words the counselor had suggested.

A short time later I received a text from Bird saying, “I’ll have him there on Monday”. I was surprised. I expected much more of a fight.

Then I received a call from Dylan. I told him everything I had already told Bird. He was angry and kept talking in circles trying to find his way out of the situation.

“Dylan, I’m doing this because I lov..”

He cut me off. “You’re a stupid fucking bitch,” he said, hanging up.



Losing Dylan, 1

Dylan and I met for dinner at a local restaurant. I wanted to see him because I missed him. I wanted to connect with him if possible. A few days prior I received a call from the school police officer. Dylan had been verbally confrontational with him and then spat on his police car.

The parent part of me felt that I needed to try to stop Dylan from where he was going. As a result of his actions, he was now facing charges in the juvenile justice system. His problems with anger and authority were likely to lead him to jail or prison, if he didn’t change his course. So although I was hoping for a connection, I also felt it was imperative to talk to him about his actions and the resulting consequences.

Bird dropped him off and Dylan strode into the restaurant with his usual swagger. He was wearing his long dark curly hair tied back in a man bun, and a tie-dyed bandana was tied around his forehead. His boots made him at least a foot taller than me. He was wearing beads around his neck and wrist. His eyes were dark and flashing. I could tell he was high on something. We ordered and he inhaled his meal quickly. We made small talk.

I mentioned the police incident. I tried to take the assertive authoritative role that had worked in the past. I expressed my concerns. And then it began.

“I’m not taking life advice from you, Jess“. Dylan had begun calling me by my first name instead of “mom” or “mama”. When he said my name he emphasized it. “You’re a horrible mother. You’ve never done anything for me.”

He began listing my failings one by one. I attempted to address each one, apologized and attempted to reason with him. His anger grew and then erupted. He jumped out of the booth and walked out the door.

I called Bird. “He just walked out. I don’t know where he went.”

Were you guys fighting? Bird said with an accusatory tone.

“I wasn’t fighting, but he was,” I replied.

“I’ll be right there,” she said.

Suddenly Dylan reappeared, reeking of cigarette smoke. The nicotine had diminished his edge by a small margin. He sat down and resumed his attack. Again I felt confused and unsure of how to respond. A lot of his complaints seemed to be related to the custody lawsuit Bird had filed against me two years prior. He was now claiming that during the time that he did not want to communicate with Bird it was because I had refused to allow him to. This story line and the distorted reality around it was infuriating to me. After trying to be calm and rational my anger boiled over and I said something flippant.

He flew out of the booth and walked to the door. Before he pushed it open he looked back at me and yelled, “Fuck you Jess!”

I sat there, shell-shocked. The other patrons in the restaurant were looking at me and squirming in their seats.

The woman who had been our server came over and sat next to me in the booth. She put her arm around me said, “I’m so sorry that happened. That must have been really hard.” She seemed to understand exactly what happened and had probably overheard some of our conversation while she was waiting on us.

I took great comfort in her gesture, a complete stranger offering compassion at the time when I needed it most.

Botox. It’s not just for wrinkles anymore.

I try to avoid most Western medical interventions that are offered to me. Many of my current health issues are related to previous medical interventions that failed. I’ve yet to find a doctor that considers all of my diagnoses before offering treatment. Luckily I have a naturopath who treats me like a human instead of a fictional representation of me on a computer screen. I also have a great Rheumatologist and a decent Neurologist.

However recently my Neurologist suggested Botox injections in my neck and spine to help alleviate some of the severe pain I live with daily. It’s really hard to turn down an intervention that has a potential to help with pain, which is the most difficult symptom I experience. A friend had Botox injections in her neck and over the course of a year, she was able to return to fully living her life. It definitely seemed like it was worth a try.

The first set of injections were in my neck, up my scalp and along my thoracic spine. The injections were given to treat Cervical Dystonia. After the injections I had a huge pain spike that lasted for several weeks. In addition it was accompanied by severe weakness in the muscles that hold my head up. I have Ehler’s Danlos and Chiari Malformation which I think the Neurologist was not aware of. Even if she had been, I don’t think it would have made a difference. Most healthcare providers consider these diagnoses ancillary and many don’t understand how they manifest in their patients. Everything is filed under Chronic Pain Syndrome and it is generally considered non-treatable, except perhaps with Lyrica, which made me feel suicidal.

After the first set of diagnoses, because my reaction was so severe, I thought about discontinuing the treatment. But the Neurologist had told me that some people don’t achieve relief after the first set, and some don’t see relief for an entire year. The injections are given every three months. I received the second set around the first of the year.

One week later I found myself once again in severe pain. The weakness was affecting my scapulas and they began to protrude painfully from my back. The pain was constant and unrelieved by anything I tried. It feels as if my scapulas are being ripped from my back, one side at a time. The Neurologist had reluctantly prescribed a short course of muscle relaxants with the admonishment that she would do it “just this once”. They helped somewhat.

The pain has been so severe that at times I feel sick to my stomach. My ribs feel constricted and combined with the pain I often find myself breathing in gasps. Multiple times per day my heart starts beating rapidly and with an irregular rhythm. It feels like it is jumping around in my chest and sometimes can last up to an hour. The irregular heart rhythm comes with breathlessness and dizziness. The only position that relieves the pain is lying flat on my back. I’d heard that Botox injections were helping a lot of people with Cervical Dystonia. But what if a person also has Ehler’s Danlos, Chiari Malformation, and a connective tissue disorder to boot? I did some research and found a recent journal article describing severe pain reactions when Botox injections were given to patients with Ehler’s Danlos and Chiari Malformation. It indicated that more study was needed and that extreme caution should be used.

In today’s medical system there is no time for doctors to read research. Patients are scheduled back to back in miniscule time slots that don’t allow for discussion. In spite of all the promises of the electronic medical record connecting physicians and patients, it leads to the opposite. After 6 years of chronic illness my medical record is extensive. I’ve collected maybe 12-15 diagnoses along the way. It’s all right there. But doctors don’t even have the time to look at a patient’s medical record to consider the other diagnoses. They must deliver specific treatment related to their specialty in a very small window.

The pressure for healthcare providers that comes from up above is non-stop and intense. The powers that be use the electronic medical record and other means as a way to monitor healthcare providers productivity. There is enormous pressure to complete activities like entering data into the electronic medical record. Although it is a cumbersome task to enter data and attend to all the drop down menus involved, healthcare providers are often not given time to complete this task. They must squeeze this time in somewhere or they will get dinged by the system. The system itself is much more of a problem than the doctors themselves. Even good doctors who want to provide good care are held captive by the profit margin.

I think it’s been about 2 weeks or so since I received the injections. Over the last two days the pain has decreased slightly, but not by much. At this point I feel like they are probably not the right treatment for me.

Another thing I’ve been thinking about lately is the term disability. When I was unable to return to work I was required to prove I was disabled in order to access my long-term disability benefits. The long-term disability company required me to file for Social Security benefits which I was also awarded. The term still troubles me greatly. I’ve always thought of a disabled person as someone who was paralyzed or in a coma, and I am neither. I was raised with a strong work ethic and honestly I have found great satisfaction in working in three different careers. I want to work again in some capacity. If I work at all, my LTD benefits will be cut off. Social Security grants me a trial work period which is nice. But what if I can’t work? What if I go back and end up in the position I was in when I was working before? I was in so much pain and still trying to be a decent parent and perform at my highly stressful job as a healthcare provider. I had to take opioids daily in order to remain standing. That life was no life at all.

I am verifiably disabled by the US government (which, by the way is no small feat). But I never consider myself to be. If I am forced to disclose my employment I say “I am disabled” and immediately feel shame. I’ve always held myself to impossibly high standards. Even after I’ve accomplished something big, I minimize the accomplishment and point to all the things that are yet undone. And ever since the illness began there have been more and more things that have been left undone. It seems a difficult task to find the balance between acknowledging the illness and how it affects me vs. expecting myself to perform as if I have no illness at all.