This is the third of a number of posts related to the stroke I experienced in February of 2010. Before you read this post, it might help you to read Parts 1 and 2 of the series.
For the first few months after the stroke, I was busy going to therapy and doctors’ appointments…. There was still hope in me that a return to my pre-stroke life could be just around the corner. However, as time ticked away, the outlook got ominous and very dark. It started looking more and more like I would not recover even basic functioning and that my quality of life would not improve. I felt like I was standing surrounded in a circle by a series of doors. All the doors had handles, but the doors were all locked. Nothing I did to try to find significance and purpose seemed to work. I started to see my condition no longer as transient but as likely permanent. I would not be able to walk. I would not be able to drive. I would not be able to read because my vision was all screwed up. I would fall frequently. My sexual functioning was gone forever. My headaches would not improve, and I would live with indescribable pain. I wouldn’t be able go out of the house because the stimulation overwhelmed my senses, and I got acutely nauseated. Riding in a car would be hard to manage since it aggravated my vertigo. Music, one of my life’s loves, was taken off the table. Listening to just about anything triggered symptoms.
It is hard to overstate how hard it was to swallow closing my practice. Just like many people (especially men, I think), I had developed an identity around my professional self. I was a licensed therapist, and that brought me purpose. I was making a difference in people’s lives. I was in the trenches. I was running my practice out of two offices, and my work was extremely rewarding. My work is what got me going in the morning. I had big plans to expand the practice, to hire on additional clinical staff. But I went from wide open to disabled in a blink. It would take a long, long time to be able to fathom my life’s having purpose if I couldn’t return to work. Eventually, however, I had to surrender my license to practice. That felt like the ultimate defeat. Without my work identity, I was indeed lost. In later years, I would see how God used this experience to shape me into a better therapist and better person. But at the time, letting go of work felt excruciating.
The real darkness began to settle *internally*, and it permeated my soul. By the end of summer 2010, the hopelessness began creeping in. I was terrified of living the rest of my life in my current condition. But I lost that part of me that wanted to fight. I began resigning myself to life as it was. I became chronically suicidal. I don’t think I would have actually harmed myself, but I started begging God to take me. I had lost any sense of purpose and meaning in my life. I didn’t see any way of making a difference in the world. You know the way people dream about tomorrow or next week… or next year or when they graduate from college or get married? I didn’t have the luxury of that kind of forward-based thinking. Tomorrow was destined to be just as miserable and anguishing as today and yesterday.
As time went on, insomnia became one of the most threatening symptoms. I didn’t know before that insomnia can kill you. I was going days and at times over a week with no sleep. I hallucinated… sometimes graphically. And the content was often dark. I would see skeletons and severed body parts. I would see people in chains in some dark dungeon somewhere. Those would happen at night, and I sometimes struggled to discern the difference between my hallucinations and reality. As I wrote in an earlier post, there were a couple of times at 3 AM, roughly, that I hallucinated there were malicious people on our property. I called the police and grabbed my gun. I scared the hell out of my wife and daughter who were awakened by the commotion, but they managed to get the gun away from me. When the police arrived, obviously, they found no one on or around our property.
By the end of 2010, multiple doctors told me and Karen in so many terms, that I was not expected to live much longer. They couldn’t figure out why my symptoms were not improving at least some. The symptoms, if anything, seemed to be getting worse, and I wasn’t responding to treatment. Massive doses of sleep drugs and benzodiazepines did not help me sleep. My depression was getting worse, and some were concerned I might commit suicide. Larry, my long-time therapist, suggested we organize a meeting of my support network to discuss the transition my family would go through after I was gone. My good friend and minister sat down with me, and we started discussing my funeral. Karen and I had many talks about the life she and the kids would have without me.
By the end of 2010, a new set of problems had emerged around my medication regimen. Later, my primary doctor at the time would tell me that she was mostly just treating me to make me as comfortable as possible (palliative care). She hadn’t expected that I would make it, so she was very generous with heavy drugs. However, by the end of 2010, I was very much physically dependent on benzodiazepines and opioids. My doctor was prescribing unreal amounts of those classes of drugs. At some point, I was on nearly 400 mg of oxycodone per day. Eventually, the only way I could keep withdrawal symptoms at bay was to take so much of the drugs as to risk a lethal overdose. Every month I would run out of benzo’s and oxycodone a week before time for refills. I overtook the drugs so that, at least several weeks of a given month, I wouldn’t have to deal with withdrawal symptoms. This went on for two-and-a-half years. The drugs were slowly killing me, plus I had all the residual stroke symptoms to deal with. My life was a living hell. As if the drugs were not enough of a problem, I began to drink to self-medicate. I truly should have died many times. But that was not to be. The darkness would be my constant companion for three years or so. I kind of got used to it. Hey… at least I knew what to expect from one day to the next.
During those three years, I became embittered with God for forcing Karen and the kids to live through having a deathly ill husband and father. Often I felt guilty for being sick. I went back and forth between being angry with Karen for not meeting my needs as I expected and feeling horribly guilty for asking for *anything* from her. As you could imagine, living with a suicidal and acutely psychotic man was not easy. There were some very dark places that my family walked through. I know my daughter became angry that I had to endure the pain I was going through. My son coped largely by pulling away and spending whole days in his room with the door shut. I was very hard to manage physically. I got up and tried to do things I couldn’t do, and in my condition I didn’t have the insight to know that what I was about to try was beyond what I was capable of doing. Karen lost sleep many nights due to fear of what I might do in the middle of the night that could hurt me. She got frustrated that I was not easy to redirect. In my state of mind, I couldn’t understand why she was upset with me.
While I had to deal with huge personal losses due to illness, my family, as a unit, endured losses too. Karen and the kids were suddenly one night forced to give up so much. Karen all of a sudden had a different man to live with than she had known for 18 years. The kids had no clue what to do with me. I think they leaned heavily on each other for support during my “darkness.” Karen worked a lot, and that was a place she went to gather herself. Going to work was a time of relief for her. Believe it or not, my daughter saw a silver lining in our family’s dark cloud. During an open mike session at our church, she shared that although she had difficulty dealing with my illness, she was glad that I was around more. Before the stroke, I was busy *all* the time. I was rarely emotionally available to my family as I should have been. It took me a while to recognize it, but I think one of the indicators that God’s hand was active in my darkness was that I was indeed more available to Karen and the kids. I couldn’t go anywhere, so I was never further than a walk to the living room.
Ironically, my faith grew significantly over those three years. My priorities had been completely realigned. Mundane things that human beings busy themselves with seemed shallow. I was living in the space between life and death. As time went on, I grew much less cynical and angry. But the loneliness got worse with that growth. I began feeling that there were so few people I could think of who had any way of relating to what I was going through. People would try to connect, but they just didn’t get me. They couldn’t… and eventually that was ok.
I leaned on God so heavily during those lonely times. He’s all I had. Plus, He was obviously redeeming the misery that I was forced to live with. He didn’t do it by making me better, but he did it by giving me a glimmer of purpose. People would come over and talk with me. Later, I would hear back from them something like, “Jim, your courage is so amazing. Your honesty is so refreshing. I wish everyone were as “real” as you.” People would come and sit in my living room (ironically, where my hell began) and would share their struggles. I would listen and just be present with them and occasionally give some guidance. This happened over and over and over. So I had darkness and light going on at the same time. I guess it’s kinda like having it rain while the sun is shining. I used my time often to pray for others. Submitting to God’s purpose for me, though, and investing in others didn’t happen over night. At first I resisted the idea that I, in my miserable condition, would be used to serve and bless others. It really pissed me off at first, because God chose to use me through His power to help others while leaving me to live in hell. But God and I worked through that. That became a holy thing in my life. I knew God and I were in deep, and that was an amazing feeling. Something I learned during my hell on earth was that depression and faith are not mutually exclusive. I connected with Elijah in the Old Testament. He prayed for God to take his life, but God had very big things planned for Elijah’s future.
Next post: A Glimmer of Light