Caregiver Awareness,  SCI Awareness,  Wheelie True Stories

Love is Patient, Love is Kind

Guest Blogger: Adria Robbins

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

1 Corinthians 13:4-8

Many of us are familiar with this scripture, even if we didn’t grow up reading the Bible. My family was more so spiritual than religious so I didn’t spend a ton of time in church growing up. I do, however, remember that scripture specifically, because I would see it in movies about weddings and think it was so perfectly romantic. That was how true love looked from the inside of a television, to a 13 year old girl.

I thought “ideal love” was a 50’s sitcom with aprons and ties, bakeware and lawn equipment. That isn’t because I didn’t have any good marriage role models in my life; my grandparents just celebrated their 50th wedding anniversary and my Dad and Stepmom recently celebrated their 25th. Everything on TV just seemed so much more glamorous and I was too self absorbed to be aware of the amazing love and sacrifice between my grandparents and the same between my Dad and Stepmom, honestly.

So I thought true love was a Cinderella story with happily ever after in sparkling red lights at the end scene of a Hallmark movie. That is some people’s love story, but that isn’t mine. 

There is a whole lot of dramatic relationship/marriage mess before my love story begins. Unfortunately, learning from others previous mistakes isn’t my thing. I went through a long, hard 9 years with someone I wasn’t meant to be with. He wasn’t meant to be with me either. It was a case of “they bring out the worst in each other.” Truly. 

Nope, my love story doesn’t start with “Once upon a time“, it’s more like “…several drinks later“. Late twenties, what can I say? 

The short of it is, Alan and I met through mutual friends and we had a thing for each other, but I was married. We started to become pretty good friends through gatherings with our friends. My ex worked night shift and our relationship had crumbled to near non existent long beforehand. Alan and I had been hanging out for about a month and a half when he suffered his injury. The nicest way to put it is: Alabama River- 1, Alan-0. He went to dive off his boat one last time around dusk, after he and many of our friends had been out most of the day. Unfortunately the water was only around 3 feet deep and he broke his neck and suffered a terrible spinal cord injury (SCI).
If you’re familiar with SCI’s, he broke C1, C6-C7. He was considered a C4 incomplete quad at time of injury but at his yearly SCI checkup in August they labeled him a C5. Yay, progress! 

Alan’s injury put a lot of things into perspective for me and after a lot of soul searching, tears, worry, and hidden meltdowns, I made the decision to end things finally with my ex. Yes, I know, I started an inappropriate relationship while I was already married. That is very wrong. Trust me, I get it. I have faced up to my flaws and failures with God and if you have a problem with that well then I say you should take it up with Him.

I struggled a lot with Alan’s injury at first. We weren’t sure if he would pull through or how bad it would be at first. His family graciously had accepted me into the inner circle with no questions asked, and was keeping me updated on any progress. He had somewhat of a pinball game of room changes while at UAB Hospital in Birmingham, Alabama. His initial stay was in the NICU, and afterwards he had to spend a couple of months moving around to available rooms. This was while waiting on Spain Rehab to accept him due to bedsore development while he was in the NICU. It seemed like it was to be a never ending journey. Finally, he was accepted into Spain at the very end of August 2019.

Alan’s family was so incredibly supportive during all of Alan’s hospital stay and it wasn’t until around the end of month three that Alan finally stayed by himself some. He was perfectly capable of being there in the nurses care by himself but with him already dealing with such a huge transition, they made sure to be there physically to help with “new normal” adjustments. I wasn’t able to stay much at first due to the fact that I worked close to 2 hours away, so I would only stay one night on the weekend at first, and then just occasionally a whole weekend. When he moved to Spain rehab, his family’s ability to take more leave from work was becoming an issue so I started staying to keep Alan company and put my own mind at ease that he was being properly cared for. Most nights I would stay, wake up in the morning and make the almost 2 hour drive to work. After I got off at 5, I would stop by my apartment, grab more clothes or take a super fast shower, and then head right back up to the hospital. During the night we were woken up several times for meds, BP, cathing, or drawing blood on occasion. Then the next morning I woke up and would do it all over again. Pretty safe to say I would have dressed up in a chicken suit and sang “my heart will go on” if he asked me to. Not that he would have asked that of me. And he certainly didn’t ask me to come back every single day. He was worried about how much rest I was getting to begin with. I wanted to be there though. Those evenings with just he and I were special. We didn’t do much. We ate and watched movies mostly. On Saturday or Fridays if I was off, I would go to therapy with him. 

He finally got to come home on September 23 2019. I use the term “home” strictly meaning where he and I lived together, which at the time happened to be my tiny one bed one bath non handicapped accessible apartment. Luckily it was a downstairs unit so he was able to get in and out without too much effort. And by that I mean rolling an 8 ft ramp on wheels out into the very first parking spot that we had to keep one of our vehicles parked in at all times. If we didn’t, he couldn’t get into the apartment because it wasn’t a handicapped marked spot (much less handicapped van ramp accessible) and none of the other parking spots gave us the straight shot with the ramp back to where my apartment was. 

So I would get Alan dressed, in his sling and lift, then into his wheelchair, back the vehicle up, wheel the ramp out and set it up where it needed to be, wheel him to the van, hook him up in the van, put ramp up, lock door, and move my car into the front spot. Then we would be ready to go somewhere. It was near impossible to get him in to the bedroom of the apartment, not to mention the bathroom. There was no way possible to get him in to the shower. Luckily that wasn’t our situation for long. Alan’s parents started having a handicapped accessible home built by his brother-in-laws building company shortly after he was injured and it was move in ready a few days before Thanksgiving. The house would fit the 4 of us comfortably.

All during this time I was working full time as a dental assistant and taking care of Alan in the evenings and weekends. A family friend would sit with him during the day and take care of Alan’s bare minimum basic needs like helping him eat and cathing him.

The end of September until the end of November was a very hard time for both of us. I was trying to give Alan the best care possible, as well as my patients at work, but I was TIRED!! And no matter what anyone did as far as positioning etc, no one did it quite like me so he was uncomfortable a lot during the day. He was also unable to really go anywhere since the person staying with him wasn’t really medically trained or very familiar with his condition or the specifics of how to help him in the event of an emergency. 

When the house was finished and we all moved in together, we decided that it would be in the best interest of everyone if I quit my job and stayed home with Alan full time as his caregiver. It had gotten to where the family friend was unable to stay with Alan anymore so his mom was having to take about a three hour lunch to drive to Wetumpka from her work in Montgomery, feed and cath Alan, and then drive back to work. We were looking into a new caregiver but it was going to cost so much, and Alan wasn’t thrilled with the idea, nor was I. We just have a system where we have learned each other and the easiest ways to position and what the other person wants without always having to ask. No one was going to do it quite like me. That isn’t to say that hired private or company caregivers don’t do an exceptional job most of the time; A lot of them do. And his family (bless them) was trying so hard to help and take care of him while I was working, even when they were too. He and I just almost have an unspoken language, and one of the way it translates is into me being able to get him comfortable.

People with SCI and their loved ones they live with, know the meaning of that word is not easily achieved. Between that and Alan’s propensity for Autonomic Dysreflexia (AD) episodes, I was the best one for the job. All of my time spent in the hospital and rehab, watching the nurses, and listening to them and the doctors when they explained anything really worked in our favor. I am a sponge by nature, and tried to absorb every bit of knowledge in that setting that I thought could come in handy!

I finally quit my job the beginning part of 2020 to stay home with Alan. Then the real fun began. Taking care of a quad isn’t exactly the hardest job when I think about other jobs out there. Correction officer, police officer, fireman, surgeons, those are just a few that come to mind when I think about difficult jobs. The only nuisance about it is that it never ends; never. There are no weeknights or weekends off. I mean, sure his family could give me a break for a few hours, or even a few days, but when I come back it’s back to 24/7, around the clock care. I don’t mind it. It’s tiring, but I was built for this. I think when God created me, he tipped a tad more compassion than normal into the pot. I care very deeply for others and I guess for me that translated easily into “caregiver”. 

It’s not all sunshine and rainbows. Today was a good day, so it’s easy to look on the brighter side of things. Catch me on a bad day and I assure you my outlook is much different then. I get sad and depressed at times. And Lord knows I can get annoyed. That usually leaves me feeling guilty though because I know that if Alan had a choice, I wouldn’t be doing all of this stuff for him. He was very independent pre-injury, so when he asks me to clean his ears, or for something else at a time that I’m in the middle of something (which happens often) I try to remind myself how bad it must suck that he has to ask in the first place. And that thought usually makes me check myself and my negative attitude and turn it around.

These people who have suffered SCI, they didn’t ask for this life anymore than we did. The hard part is that they don’t know what it is we go through with them, but we won’t ever know what it is that they are going through with themselves. 

Our day-to-day on most days is pretty laid back. He’s turned periodically throughout the day and evening. He takes morning, noon, and evening meds. We try and do range of motion, but his spasms are the devil and it usually leaves me with bumps and bruises and him in an awful sweat. 
I feed him when he’s hungry…or bored… I guess I should say I feed him when he wants to eat. He takes showers frequently due to the fact that we have an amazing dream of a shower. Recently, our lives have been consumed with doctors appointments. Since majority of his doctors are in Birmingham at UAB (which is an hour and a half from where we live,) those are all day affairs. 

We don’t really have that much of a set routine yet as far as working out and that is very largely blamed on COVID-19 and Medicaid. In the hospital Alan was granted “in hospital” Medicaid but we weren’t aware that it would terminate when he left the hospital. We didn’t find out until a month after he was discharged and lost his medical coverage. He was 9 months without it. Someone in his condition without any type of medical insurance racks up medical bills faster than Usain Bolt can run. 

Then COVID happened. If Alan were to contract it, (and he’s labeled as “at high risk” of doing so) he would have a very hard time getting over it. This is mostly due to the fact that he had 3 different types of pneumonia right after his injury and it weakened his lungs. Sickness also hits people with SCI a lot harder than it would a “normal” healthy individual. As if we didn’t have enough on our plates to begin with. He hasn’t been able to attend an outpatient rehabilitation facility yet for both of these reasons. 

Pretty much all normal life was suspended when the Coronavirus hit, but we didn’t have a “normal” life to begin with so it’s been even harder. Yes, we can stay home, quarantined from everyone. That’s great besides the fact that Alan was already starting to battle depression due to his injury before the virus. Then our ability to socialize with our friends was taken away. It has been a struggle to say the least. 

Our life is messy and full of bowel programs and medicine, doctors visits and AD episodes. It’s raw and scary and overwhelming, yet it fulfills me in a way that I had never known possible. So, instead of “Love is patient” pertaining to letting it slide when he forgets to take out the trash, it’s more of repositioning him 15 times and finding the patience to do it a 16th when he says he still doesn’t feel right. “Love is kind” is me sleeping in another bed some nights so my movement doesn’t make him spasm. “It does not envy” translates into no matter how difficult this life is for Alan to deal with on any given day, he would never wish to trade places with me because he wouldn’t want me to have to endure what he does. 

The fairytale love that I envied at 13 doesn’t even remotely resemble what I have now. And I’m ok with that.

I would rather wake up every two hours to cath Alan than get a full uninterrupted nights sleep with anyone else. He is the strongest person I’ve ever met and he makes me stronger every day. He faces challenges head on with a mostly positive outlook and a goofy grin. I am grateful for every day we get to spend together and if he lets me, I will spend the rest of my life perfecting 1 Corinthians 13:4-8, with him. 

Pushing on…

Adria

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