I don’t like to go out much during the winter. I hate snow, I hate cold, and as my family and friends all know, I’m not particularly fond of wearing clothes. People will call before they come over to give me a head’s up. Or, if they do pop in, they know to yell “are you decent?” as they enter. My ex-wife and I once visited a nude resort, but that’s a story for another time. Further ratcheting up my disdain for outside ventures, was that my trusty Toyota had recently died, and I was using a Volkswagen Bug that my parents had loaned me. It took my father days to install the hand controls. It was difficult, and possibly dangerous, for me to attempt getting in and out of this car. The wheelchair-to-car (and car-to-wheelchair) transfer was not easy. Any snow or ice makes it far worse, as the chair can slide away. Brakes don’t work on ice. It had snowed the day before so I knew it would be some work just to get TO the car. Then more shoveling and work to get the car cleared off; and then the dangerous transfer into the car.
Despite all of this I needed to get my pain prescription refilled. When you are dependent upon an opiate, you watch carefully as the pills dwindle. Since these pain medications (drugs) are so heavily regulated and monitored, there is an elaborate process just to get a prescription filled.
The National Institute on Drug Abuse (NIDA) had provided some helpful infographics to make the point. Addicts have “doctor shopped” until they find someone willing to write a script. Doctors are less willing to write these scripts, so addicts will visit emergency rooms trying to get doctors to write a script. Doctors are now trained to recognize “drug seeking behaviors” and the scenarios that addicts devise to get a script written. Hospitals have developed protocols to make sure that not just patients, but increasingly doctors and nurses, aren’t able to obtain and abuse these drugs. There are horror stories of abuse, overdose and death. Nurses were discovered eating Fentanyl patches rather than discarding them, after they had been affixed to a patient’s body for 3 days. Now you must have two nurses present just to discard the patches. There’s more information on the National Institute for Health’s NIDA link here. Unfortunately, the addicts that are driving the need for the increase in regulation effect patients that are not addicted, but dependent upon the same medications. That is an important distinction for people with chronic pain issues, that appropriately take medication under their doctor’s supervision. What this means for me? I have to jump through all the hoops put in place to prevent addicts from abusing the system.
My doctor’s office requests that you call 5 business days in advance, so that they can make sure they have time to check against the state database to see if they are cleared to write a script for me. The state database ensures that I haven’t been out visiting a bunch of other doctors, and getting prescriptions filled at different pharmacies. If it’s been enough days since they’ve issued a prescription, the office will print the script for the doc to sign. My physician works in one of the myriad offices across New York State that have either not yet spent the thousands of dollars to upgrade their computer system, or are awaiting the installation and connection to the system. The offices that have completed the process are able to fax or email the scripts for controlled substances to the pharmacies already on the network. Until connected, I can either go in and pick up the script; or I can have it mailed to my pharmacy. I’ve had some delays with the mail in the past, so I’m no longer willing to risk relying on the US Postal Service. I say “risk” for a reason. If I don’t have access to this medication I will experience withdrawal symptoms. These are bad for anyone, but very bad for me, as I’ve described in a earlier post. Yes, I can die. That’s why I put I “needed” to get my pain prescription refilled.
Less drastic, I also needed to have my iPhone evaluated and replaced, because the battery wouldn’t hold a charge. If the phone wasn’t plugged in, it died in under 30 minutes. I also needed to get gas if I was out running around for any length of time. You want a full tank of gas in the winter so you can keep the car running and warm. In addition, I wanted to visit a couple of stores in the area that I learned had come to my area, and sold the sort of food outlined in my new, healthy diet. I hadn’t even known that we had a Whole Foods and a Trader Joes in our area. If I’m going out, I try to make a day of it and kill many birds, one stone.. you get it. At my pharmacy they’ll run the script out to me, so I don’t have to negotiate the step to get in. I use the Verizon at a mall, so that’s plowed constantly and I can get in. I know there’s a possibility that the other stores might not have their parking lots plowed. If this was the case I wasn’t going to get in.
Just a couple of details before we head out. I take 1-2 pills every 4 hours. I always try to take as little as possible. I keep most of these pills hidden near my bed. With young kids about you just don’t take chances. I also have a small amount kept in a pouch that hangs from my wheelchair, along with my wallet, keys and the odd harmonica or lock picking set (more stories for different days). On this day I took the pills I had in the pouch, and added it to the few I had remaining near the bed. I wasn’t due for my next dose for a couple of hours, and the pharmacy was my first stop so that wouldn’t be an issue. I was delighted to find that the car was easy to get to, and into. My awesome neighbor Mike (from across the street) had plowed the driveway. I didn’t kill myself or break anything during the transfer. I put my chair in the passenger seat, and off I went to the pharmacy. While I waited for the guys in the pharmacy to fill the script, I called my father to ask him what side of the car has the gas tank cap. I’d hadn’t yet put gas into it myself, and there was a full service station nearby. I wanted to pull in properly. I would also have them check the oil, since the light had just come on. Dad told me that you can always look at the gas pump icon on your panel, and there will be an arrow indicating the side of the car to use. Handy!
Not so handy was that the pharmacy didn’t have my pills. I could come back tomorrow. Well crap, I usually call ahead, but since I had other errands I hadn’t bothered. The guy at the gas station put in 5 quarts of oil but still couldn’t get a reading that I had enough in there. I’m not a car guy. I’d shorten my trip and have my father or his car guys look at it and figure out what the problem is later. The light went off, so 5 quarts ought to get me to the mall for the iPhone and a quick breeze through the healthy food places parking lots.
Now that I was without medication, the time I’m out screwing around had just been reduced. I tried to remember when I had last taken my medication. I don’t pay enough attention to the time when I take my meds. I have developed all sorts of things to distract me from my pain. At times it’s a full-time job. When I’m VERY successful, I can even miss a dose, which seems great – except when the pain comes back to remind me – it’s worse. I take the pills late, but then I’m “chasing the pain.” This is far less effective than just taking the damn pills. But hey I’m not going to let pills rule my life. OK, so I’ve got maybe two hours or less till I need to be home, transferred out of the car safely, in the house, transferred into bed and take the medication so I’m not chasing. No problem.
I’m not used to getting good news. I keep up a positive attitude no matter what. I’m a therapist. I can get a shit ton of, well; shit dumped on my head, and still “reframe” it into a life lesson.
I’ll be a better person for having a ton of shit dumped on me, AND, next time I’ll know how to AVOID a ton of shit.
So even as I’m wheeling through the icy parking lot of the mall, having just performed a flawless car-to-wheelchair transfer, I’m not feeling great about the prospect of them replacing my clearly defective iPhone. I have several tools in my tool belt for such encounters. Most people hate, even fear, conflict. I LOVE conflict. I can confront. I can communicate and manipulate. I’m not bragging. This is simply the skill set that I’ve developed by my accumulated experiences. I’m pretty sure I can get what I need. HOW the interaction will go, is generally dictated by the person with whom I’m interacting. Treat me well and I’m your best friend. Treat me poorly? I’ll get you fired and kill your family. (exaggeration).
There is no wait at the Verizon store… In the mall… I swear I hear the Twilight Theme music in my head (the old TV mystery show – not sparkly vampires). The guy is awesome. When he opens up the little door on my protective case and starts poking around I decide I best go preemptive:
“Boy I hope there isn’t anything wrong there after you guys talked me into paying over 100 dollars for a case to avoid exactly this problem.“
He just smiles at me and says it’s policy. He has to go through a checklist. As I’m attempting to decipher what he REALLY means by that, he keeps poking at my iPhone. He asks how long it will hold a charge. I opt for truth, and tell him 60 minutes unused. 30 if I’m talking texting, and maybe 20 if I’m playing music or a podcast. This was an iPhone 5 that was old. I was re-thinking telling the truth… maybe I should have shortened up that 60 minutes when he says,
“good news. The phone is defective. I just checked and you’ll get a brand new replacement in the mail tomorrow.”
Picture the cartoon where the character is stunned and just blinks, without moving or saying anything, as it registers. He points out that I have only 5% battery life left. Blink. Blink. “I’ll get a new phone in the mail tomorrow?” He must get a lot of that sort of shock, because he pats me on the shoulder and half leads me out of the store, as I’m kind of quietly mumbling “I can’t believe it” over and over.
Both Trader Joe’s and Whole Foods are awesome. I don’t have time to go in either but I’m in such a good mood I don’t care. Trader Joe’s is in a little strip mall and the lot is covered in ice and snow. Whole Foods is a part of another monster mall nearby and has a pretty well plowed parking lot, but I’m thinking that by now I’m probably due for my medication, and worse I’ve discovered that the oil light has come back on. So I head home still in a bit of a daze that I have two brand new stores that will sell the sorts of food I need for my new healthy lifestyle AND tomorrow I’m going to have a brand new phone! That’s when the car dies.
This is a main road. I’m in the second lane heading east and the car is dead. I pull into the middle “neutral lane” of the 5 lanes of traffic. It’s not quite neutral, because the front half of the car is in a carve out that’s actually a turning lane. At least I’m not blocking either of the two lanes on either side of me going 40-45 mph on either side of me. Time slows down in these situations. Sadly I’ve been in enough accidents that I’m used to it, and know how to use it to my advantage:
Stay CALM. You’re in the middle lane. Yes there is a chance that a speeding car may come up and kill you instantly because they aren’t expecting you parked in the middle lane of busy traffic, but it’s better than being in traffic. Maybe. After everything else this is how I’m going to die. DO NOT EXIT THE CAR. If you even open the door you will be hit. There is no room to get your wheelchair out, secure it in the non-icy road and then execute a flawless car-to-wheelchair transfer. CALL TRIPLE A. As a cripple I (of course) have Triple A. The iPhone has 4% left. Triple A called. Location given.
The panic drops a notch. Call Dad.
“Dad I need you to listen carefully. My car is dead and I’m near such and such location. I’ve called Triple A. My phone is dying” Triple A might take an hour and I need my medication now. I need you to call mom and either come get me or bring me my medicine….. got it?”
Holy fuck yes, I’m at 2% (I think to myself)
“Where are you?”
As I’m trying to quickly explain, we get cut off. Phone dead. I’m debating whether he’s absorbed both the information and the gravity of the situation. I’m not convinced. I spend some time trying to determine where the flashers are on the VW, so I can delay the dying portion of the story, when the flashing lights pull up behind me. I’m 51 now people. This is a good thing. I will admit I did a quick mental run down of whether I may have any outstanding tickets, or neighbor complaints about “gardening in the nude,” but I thought I was good to go. I give him the license and registration and explain my situation. He will stay behind me so I don’t get hit. I’m going to live! I’m getting rather cold at this point and I’m just beginning to have withdrawal symptoms. I’m trying to figure out how I’m going to get into the truck that comes to tow me. I know it’s against the law for me to stay in the vehicle. That’s why I wanted the parents to come to the rescue. After what seems like a very long time my license and registration are returned with a smile. Additionally I’m told that there is a slew of police blocking traffic. They are going to push me from the dangerous middle of the road to a parking lot off to the right. Awesome, I think.
Traffic is now completely stopped, and I have this cop telling me to put the car in neutral. I remind him without the car running I’m going to have difficulty steering the car well. He starts pushing, along with a couple more behind me. I tell him I’ll aim for the handicap spot in the beverage center parking lot, so I’m out-of-the-way. He says, “park anywhere and I’ll clear it with the owner.” I come to a stop on a decline about 30 feet in from the road. He waves with a “there you go,” just as I realize that my car is no longer visible from the road. I look for the cop to ask him to call AAA to let them know I still need help, along with my new location. That’s when I see about 4 cop cars speed away. The phone is dead and AAA is going to think I got the car started and left. My legs and stomach are starting to spasm with withdrawal, and I’m going to die here. I’m about 50 feet away from the entrance to the store and there is about an inch of ice on the lot… all uphill. There will be no flawless transfer leading to waiting in the warm store after they allow me use of their phone.
I’m going to spare you the thought process going on in my head for the next 10-15 minutes, and break some of the tension. My parents arrive. My mother will take me home while my father waits for the triple A guy. He calls and explains the car has moved to a safer location. I do a fully flawed car-wheelchair transfer followed by an even uglier wheelchair-car transfer. But I’m warm, and safe, and will be on my way just AFTER my mother backs into my father… twice. The first time she looks at me and says “what was that?” I reply “Dad,” as she hits him again. So, fairly safe anyway.
We make it to my house without incident. Then, the wheelchair slides during the car-wheelchair transfer and I have one of those time – slowing – down moments where I think “I can fix the situation.” These moments are always followed by an “oh shit” moment where time speeds up and you attempt to fall in such a way as to not break any bones. I haven’t talked much about my mother thus far but she’s like anyone’s mother. Her crippled son, going through withdrawal, has fallen onto the icy ground. She knows that she can’t get me back up into the chair on her own. She’s freaking out. I go into action mode and tell her I’m just going to drag myself inside and get up into my couch. I need her to relax and stop freaking out. I start dragging myself across the icy ground and into the garage. This is when my neighbor Cindy, from across the street yells and asks if we need help. I yell “no” and tell my mother I just want to get into the garage, and get the door closed. This is when I comment to my mother that the car definitely has an oil leak, as I’ve just dragged myself through the spot where it has pooled. I make it into the garage just as Cindy’s poor husband Mike comes running up in his pajamas to help. Cindy had ignored me. I’m trying to get my pants back up, as they always fall down whenever I drag myself across anything. I’m telling Mike that there IS a move where we invert the chair, and then using the bottom bar as a fulcrum, we can get me back up – but I’m worried about his bad back, AND my pants not being all the way up. In a few extremely awkward moments I’m in my chair, up the ramp and successfully wheelchair – bed transferred and taking my medication. I’m warding off withdrawal and chasing the pain. I tell my mother that I’m okay, and if I’m not okay after 30 minutes when the medication kicks in I’ll call her. She leaves and the medicine works.
I’m fine. After a day like that I take it easy and do a full body check to make sure nothing bruised or is twisted or broken. I wish there was a moral to the story or I had some awesome punchline. No, this was just a day in my life. One that seemed a perfect storm of mishaps. One of those days when you drop your keys twice, and then get that feeling that it’s just going to be “one of those days.” I pay a LOT more attention to that little feeling now. I think about this story and I laugh. That’s easy looking back. What I have come to appreciate over time, is that it’s funny to me even as it’s happening. I have gotten to the point where I can step outside of the situation; no matter how dire, and laugh. Because it’s ridiculous. Right? It’s a perspective I’ve found helpful. For me it’s critical to be able to laugh at myself; and find the humor. That was a long story. I appreciate you sticking with me till the end. I’m wondering if you’ve ever had one of those days where just everything goes wrong?