The Dark Time
1996 – my least favorite year to date.
I refer to it sometimes, as the dark times, or the dark year, but I rarely give details. Partly that is because the events of that year still have an oppressive weight, and it is impossible to give words to them without reliving portions. Partly it is because the story is too long, and beyond what anybody has patience for.*
I guess it starts in the early ’80s. Really, is starts earlier than that, the first signs, but it isn’t until the early ’80s that it seems more serious. I’ve had trouble with my joints since I was young. At first, it seemed like I was unlucky, or uncoordinated, or careless. I rolled and twisted my ankles often. I complained of my knees hurting. In 5th grade I broke one ankle. In 6th grade I broke the other. I had shoulder problems, hip problems, elbow problems, and knee problems. My orthopedist said he suspected a specific defect with my cartilage but said the only way to prove it was via arthroscopic surgery, and he saw no point in doing that because there was no known treatment. So, we did nothing but treat specific injuries and try to prevent further injuries.
By junior high I was signed out of P.E. by doctor’s notes probably as often as I was in P.E. Maybe more often. Then I began to have back problems (look at all those joints in the spine). Both direct back pain, and pain in other places being caused by pressure on the nerves in my spine. Eventually tests showed severely herniated discs, but of no known (injury) origin. At that time, back problems were treated with bed rest, limited activity, heat, and braces. We now know that Physical Therapy is usually a more effective treatment choice, but that was not the standard of care at the time. Things would get better, things would get worse, but better never meant pain free. I was in pain more often than not from the time I was 10 years old until I was 13, at which point the pain became always. For regular daily pain, I took nothing- I just lived with it. On days of more advanced pain I took various types of painkillers, depending on the level of pain. This meant that by the age of 20, I knew a fair amount about various painkillers. I knew their brand names. I knew their generic names. I knew their relationships to each other. I also knew which ones helped me under which types of circumstances, which ones didn’t relieve pain, and which ones had side effects too bad to be worth any pain relief.
In 1994 I quit sleeping. That’s an overstatement, but at the time, it is how I felt. I entered into a long stretch of insomnia when I was 7 months pregnant. I couldn’t sleep for more than two hours at a time, if lucky, and I never manage more than 4 hours total per day. This was still the case in 1996, and by then I was severely sleep deprived.
In 1995 my husband took a job with Walt Disney Imagineering and we moved to the Los Angeles area from Seattle, along with our 6 month old daughter. We knew nobody in the area. We found a place to live, and tried to settle in to our new life. It was my husband’s first job out of grad school, and with a new baby, of course everything was new and different. With his new job, we signed up for one of their insurance options. We picked the HMO because it seemed like the best deal. I’d been with an HMO in Seattle for years and never had any problems dealing with that form of insurance. They assigned us a Primary Care Physician near our home, which meant that doctor started getting his monthly payments for us. In January of 1996 my husband slipped and fell on the kitchen floor. He broke his ankle in 3 places and required surgery. The whole thing was extra complicated because our PCP had never met us, and at first refused to acknowledge that he was our doctor. My husband was left for hours in the ER with no treatment at all, while they waited for the doctor to acknowledge he was a patient and approve his treatment. We ended up having to transfer to a different hospital to be checked in and get the required surgery. I drove, because an ambulance would have cost money and insurance was not going to cover the transfer. We actually, I kid you not, got a flat tire on the way to the new hospital. He had an ankle broken in 3 places which required surgery. He hadn’t been treated yet, so the ride was already rough, the flat tire was just the icing on the cake. That part of the story doesn’t really matter, but it was kind of a flavor of how every aspect of the several few months went, and that does matter.
Our assigned PCP continued to prove useless, so I selected another who was associated with the hospital he was in, and whose office was in the same building as the orthopedic surgeon who operated on him. The change went into effect the following month. The new PCP wasn’t great, but she was better than the one assigned to us. During the long and difficult recovery, insurance quit paying the orthopedic surgeon, and eventually his office wouldn’t schedule my husband for follow-ups any longer until payment arrangements were made. Again, it isn’t directly related to my problem, but it was more of the mud soup that consumed everything that year. A year later, after a lot of battles and letters, insurance finally agreed that yes, of course it was ALL covered, and paid the surgeon, but by then a lot of his recovery had been without specialist care, and that impacted the rest of his life (he finally had a revision surgery in 2010).
So, I had a less than 1 year old child, and a recovering husband, at first in the hospital, and then home in bed, and eventually in a wheelchair. The kid learned to walk while her father couldn’t. I had a kid who couldn’t walk well, quickly, or for long distances, a diaper bag, and a husband to push in a wheelchair. At one point while he was still wheelchair bound we had to spend weeks at Disneyland so he could do an install. We had to go to Vegas for work while he still needed a wheelchair for long distances, although he was learning to walk again with a cane. By the time he could walk again, my back was a total disaster. The neuropathic pain had gotten so bad it was crippling, and no medication could touch it. Neuropathic pain is difficult to treat. Some people can find relief, many cannot. I am one of those that cannot achieve significant relief, at least not without side effects that are more problematic than the pain alone. My functionality and quality of life were both going to total crap, and it was getting worse, not better.
Eventually we decided to consider surgery, and that’s where 1996 really went to hell.
Our PCP referred me to a very well regarded rock star of a neurosurgeon. The surgeon said he could make me better. We were told that I’d be on my feet again the same day, and that I’d be home in a few days, that I might need a walker for a week, but that most people feel so much better, so fast, it is more of a problem to keep them from re-injuring themselves by moving too quickly. I was told I’d be unable to lift anything over 5 lbs for 12 weeks. We were told that getting up and around was vital to recovery, and that I’d be sent to aquatic physical therapy as soon as my incision healed, because that was the most effective way to do rehab for my condition.
We decided to go forward with scheduling the surgery, and we made arrangements to get help with the recovery period. We flew in a relative for the time immediately following surgery, and hired a mother’s helper to help me for the remainder of the 12 weeks. Our ducks were as in a row as we could chase their quacking asses, and I went into surgery as neurotically sure that I’d never wake up again as I always am when they are putting me under, but also with expectations that everything would be fine.
I woke up in recovery and everything had gone as expected. I was able later that day to get on my feet. Everything was going as we’d been told it would go. The severe burning pain in my legs had abated. The weakness was somewhat improved, the numbness was still there, but the lessened pain was a big win. It hurt less to stand up post surgery, than it had pre-surgery. I hated being in the hospital, and was thrilled when released to go home. That happiness lasted about 4 hours, the stretch of time I was still covered by the IV pain killers pumped into me at the hospital.
I began having bad muscle spasms, at first just in my lower back. They would set off by the smallest movement side to side, and standing and moving around was nearly impossible. We called the surgeons office and were told to double up on the pain meds. I had been prescribed something that had only been approved for use in the US in 1995, so it was not a medicine I had experience with. It did not work for me at all. The next day I called the surgeon’s office again and explained that I was still in a lot of pain and couldn’t move. They told me I had to move. I asked for different pain medication, and explained what meds had a history of working for me. This was a bad move.
I’d spent my whole life up until moving to California, having a fairly reasonable relationship with most medical doctors. There had been a few really negative incidents (like the totally incompetent anesthesiologist when I gave birth), and I had experienced some problems due to moving around and having less continuity of care, but in the decade prior to moving to California I had developed decent rapport with my doctors and we were a team, interested in improving my health and making my life better.
In Los Angeles everything to date had been rather adversarial and much more insurance and profit focused, and less patient focused. Once things started going wrong, there was no longer the slightest hint of teamwork. When I wasn’t getting better, everything they did seemed more about defense against a malpractice lawsuit, rather than being the least bit about helping me get better. Plus the doctors immediately became suspicious of me lying about my pain in order to procure drugs, which was completely offensive and ridiculous seeming to me. For one thing they had access to my prior medical records, and for another, I hadn’t requested a single pain prescription from them during the whole time I was having the severe pain that eventually led me to the surgery. I had no reason to, I knew from a long history of living in my body that meds were not going to help that type of pain, and I also knew that meds would help the pain I was having post surgery.
They left me another day with insufficient pain control, and by the next day my husband had to call to try to reason with them, because I was in too much pain to even try. They reluctantly upped the dosage of the med that wasn’t working (again), which still did not help. I was no longer able to get up and move around, so the problem began spreading. Like the surgeon had warned prior to surgery, getting up and moving around was vital to recovery. Then a muscle spasm came along that was strong enough to rip open my incision and it began weeping all over the place. That interested the surgeon’s office enough to have me brought in for a visit. The ride there was hell. The surgeon accused me of not taking it easy enough and causing the problem with my incision. They reluctantly added a mild muscle relaxant prescription, and sent me home.
I didn’t get better. The incision didn’t get better because the muscle spasms and inflammation kept it from healing. At my next follow-up they decided to readmit me to the hospital to have more control over incision care. There I was put on much stronger IV pain medication, and was almost immediately better. The spasms stopped, and I could get up carefully on my feet again and start moving around.
A hospital doctor diagnosed me with having an infection at the surgical location. The surgeon literally yelled at me, his voice dripping with accusations, “This has never happened to me before!”
An infectious disease specialist came to see me, and he thought the infection was mild, and not what was causing my problems. I was given a simple dose of antibiotics. The wound stopped seeping, and I was released from the hospital. Again my meds were reduced upon release. Again I ended up in bed with muscle spasms if I dared to twitch, much less get up and get active.
At this point the relative had gone home and the mother’s helper was with us. She had been hired to be the person to lift our daughter up during my “lift nothing over five pounds stage” and instead she was being used as primary child care and nurse. It was ridiculous. I was suffering from full body muscle cramps. You know those leg cramps that almost everyone has gotten on occasion – the calf muscle cramps up, and your foot deforms, pointing your toes against your wishes, and you have to struggle and work and massage to get things back to normal? That would happen to my whole body. I’d bend in half backwards with my back lifting up off the bed, like some kind of possessed demon levitating. I’d scream like I’d been possessed by a demon too. I couldn’t help it, and couldn’t control it. Anything could set me off. Moving. Breathing. Somebody touching me.
Our kid became emotionally distraught, and who could blame her? Her mother could never hold or hug her, and oh yeah, mom would just screech suddenly, day or night, a banshee scream to rip apart the house. She began biting herself in punishment. I’d moan, whimper, or scream, she’d bite.
We begged for stronger medicine. He wouldn’t give it to us, saying that anything stronger would make me sleep all the time, and getting up and around was vital to healing. I tried to explain that I don’t sleep anyway, and that I wasn’t getting up and around. They eventually agreed to stronger medicine, but only in the hospital setting, so back into the hospital I went. The “mother’s helper” was now the nanny. It was not what we hired her for, it was not what she signed up for, we needed to figure out a better solution, but our life was falling apart and it was hard to think at all.
Back in the hospital, I was put on a variety of things to control the pain, and once again, I improved markedly. It also managed to cure my insomnia and I started being able to sleep up to 8 hours a day, but still in chunks. It was a long way from the sleeping all day that he had been concerned about. The nurses marveled at how little I slept, but I thought I was sleeping great. Because I was clearly not making expected post surgical progress the surgeon announced that he wanted to do another surgery. I didn’t like or trust him at that point, and I called my husband at work, in tears. This was before the proliferation of cell phones, and the project he was working on had him away from his desk, so I needed to call a shared number. His manager answered, and when I asked for my husband I was informed that he was busy and didn’t have time for personal calls. I was hung up on.
The infectious disease doctor came back again to talk to me and offer a second opinion. He didn’t think it made sense to open me up just to poke around and see what was happening, so we decided to go the more conservative route. My incision was healing, so I talked to them about aquatic physical therapy. They told me my insurance wouldn’t approve it. I was released from the hospital again because I had improved up to the point that I could walk carefully and slowly without a walker. Once again, they put me on weaker pain medicine and weaker muscle relaxants when they sent me home. Once again, that went poorly.
We had run out of budget for keeping the mother’s helper, and we still needed help, so my mother rearranged her life so that she could come for a couple of weeks. It was a horrible experience for my mother, I’m pretty sure she is still traumatized by it. I had a walker and a wheelchair. The wheelchair was only used for doctors appointments. I couldn’t sit up without being in horrible pain. The walker was only used to go to the bathroom. Being on my feet was painful and dangerous. I’d have to pause to let muscle spasms grip me, and then carefully shuffle a few more steps, trying desperately to not set off another spasm. Because going to the bathroom was such an ordeal, I ate and drank as little as possible, so I could avoid needing to go to the bathroom. I’d basically only consume what my mother would harass me into consuming, and I’d argue with her that I wasn’t hungry or thirsty. My lips were dried and cracked like I’d been lost in the desert for weeks. Our daughter was much better off with her grandmother and three year old aunt to help keep her distracted, but my mother could only stay a limited time. Next we had my grandmother come to stay with us, but she also could only stay a limited time. It was clear I wasn’t improving and we couldn’t afford full time child care. We let our daughter go live in Nevada with my mother.
This was devastating. My husband worked 80 hours a week during non-crunch time, because that was what working for The Mouse was like. I was home, alone, in misery, an utter failure as a mother. I was basically unable to do anything but lie in bed and scream. At least they had cured my insomnia. Even without the hospital drugs, I could sleep. Things had somewhat improved. On the muscle relaxants I was on, I rarely spasmed or cramped as long as I stayed in bed. Getting up remained a nightmare. Sitting was a Hellraiser torture chamber of pain. It was a constant battle to keep getting them to prescribe the muscle relaxants. When nobody would prescribe them I’d go back to being the backbending, levitating, demon possessed screaming banshee again.
My relationship with the surgeon had collapsed further, with them sending certified letters declaring me non-compliant because I hadn’t taken his advice on a second surgery and had not scheduled a follow-up. I didn’t care. My husband begged the PCP to argue with the insurance company and make a case for medical need for aquatic physical therapy. She said she wouldn’t do it unless I agreed to start seeing the surgeon again and sign papers saying none of this was his fault. I didn’t care. He checked into paying for such therapy without insurance help, but it was prohibitively expensive, and they wouldn’t do it without the doctor’s prescription anyway.
Nothing mattered to me. I wanted to die, but I didn’t even have enough give a shit left to take action on that. I couldn’t figure out a way to, well, except for the whole refusing to eat or drink thing, but that was slow going.
My husband decided to drive me to Nevada to go stay with my family, so I could see our daughter regularly. With the seat completely reclined I made it through the 9 hour drive with little enough screaming that he didn’t drive us into a ravine. I was put into a bed in my grandmother’s guest bedroom, and there I stayed. At least the bathroom was closer than it was at our own house
My husband went back home and kept working. When we could afford it he would fly to visit us for a weekend. On a visit he convinced me to go to a developed natural hot spring in town. It was a place that had private rooms and really wide steps down into the water. It was expensive, but he thought it was worth it to try. I didn’t care, but didn’t feel like arguing. The car ride was the usual nightmare, and the private rooms were a long way from the parking lot, shuffling along with a walker, trying to avoid starting a spasm. He rented the room for an hour. He helped me down the steps into the water, and I could stand, without the walker. A few minutes later, I could move around. I could squat, I could bend. It was amazing. Hey, aquatic physical therapy, look at that. When the hour was up I was better off than I’d been in close to a year.
We looked into what it would cost to get a used hot tub for our own backyard. My father agreed to let us borrow the money for that. My father-in-law agreed to travel out to run the gas and power lines to install it. We moved back home. Within a week of having our own hot tub and being able to exercise regularly in warm water, I was able to walk again. I didn’t need a walker anymore. If I wanted to get up to go get something, I could just do it.
Of course I still had my myriad of joint problems, and I never recovered completely from the nerve damage. I have better and worse days, but I always have some areas of paresthesia and weakness in my feet. It impacts my ability to balance and also makes certain kinds of activities more difficult. Actually, if the areas would stay exactly the same, it would probably be easier to compensate for, but the ever changing nature of it increases the impact.
Still, things are much better now than they were during that year. But, there are long lasting physical, psychological, and behavioral ramifications.
Anyhow, that’s the story of the dark times, as much of it as I feel like telling right now. It was bizarrely difficult to type this up, and this is far from the first time I’ve tried. I reread it and think, “It’s not really that big of a deal. It could have been so much worse,” and it really could have been, but it still had (and has) a very large impact upon me. Tomorrow I’ll try to explain what is prompting me to share this now.
* When I started writing this, I thought I would come close to telling the “whole” story, but as I wrote, I realized that there are many details I am still unwilling to share. They are just too big of a trigger. Some of the details of physical and emotional pain and betrayal are just not yet fit for the light of day, and perhaps never will be. So, this was a sanitized for my protection version of events.
I can not even imagine the hell of any one part of it, and it totally helps me understand why you are the way you are about the medical system.
I would offer hugs, but I fear I would cause you pain.
Thank you for sharing. I didn’t know you’d been through these ordeals.
“I reread it and think, “It’s not really that big of a deal. It could have been so much worse,” and it really could have been”
NO. It was horrible. It was deplorable. And you deserve(d) SO MUCH BETTER.
It’s like a story straight out of “How we do harm : a doctor breaks ranks about being sick in America” by Otis Webb Brawley (which I don’t recommend for the sake of your blood pressure, unless you’re feeling masochistic). It’s pretty darn criminal that you had to suffer through all of that when it likely could have all been avoided had they actually consented to changing your meds in the first place. This country’s paranoia about medication is more damaging than any other aspect of health care in my personal social circle.