Hello all! I am so sorry it has taken me this long to write another blog post. It’s been one heck of a year, which I will try and share with you in upcoming weeks, but I wanted to start with this post because it is the most recent.
Last week was awful. Satan was on the prowl and it felt like I was his most prized victim. A little dramatic? Maybe.
I had just had several emotional talks with one of my closest friends about the future of our friendship and all of the changes that have taken place since the crash. And there have been many. Mostly, because my life has essentially been put on hold for such a long time. I can no longer function as the Erin that once was because she no longer exists. She died in the car the night a wrong-way drunk driver hit me head-on and almost took my life. Although, the driver didn’t manage to take my physical life, she took so many other things from me. I am essentially still figuring out who the Erin I am now is, and how to navigate this new world.
With regard to friendship, I have learned that it can take work just like in any other relationship. I’ve found that relationships ebb and flow within the different stages of life. I have also learned that traumatic events, not only change the moment, but have ripple effects into the future as well.
One of the greatest ways the crash has affected me has been my ability to feel safe in the world and with others. In turn, this lack of safety has caused me to put up emotional walls I never had before.
One moment essentially changed so much of what made me me. I lost my car, my job, my independence, a potential love interest, time, and function of my own body, among so many other things. I have not only lost certain basic bodily functions, but also the ability to do so many of the things I love the most. I have had to grapple with the things that seemingly gave me security prior to the crash including: my physical appearance, job title, potential for a relationship, etc. because all of these things were lost to some degree, or severely impacted.
In turn, the heaviness of all the emotional loss and trying to find my place in a world I no longer recognize has affected my ability to be as present and giving in relationships at times, although I have done my best to give what I can. I strive to be a person with strength who can give to others even when I am in pain either physically and/or emotionally.
As a result, in an attempt to verbally process complex feelings and to also be vulnerable, I have on more than one occasion— and with more than one friend— shared my struggles of feeling unsafe in the relationship. Let me be clear and say that this issue was not because these individuals no longer provided safety, but instead that my ability to feel safe in a world “where anything terrible can happen to any person at any time even when that person is doing all the right things” has felt overwhelming at times. My brother-in-law also shared something with me and I think I have finally come to terms with this concept: Being the victim of one traumatic, and violent crime, does not protect me from future traumatic events taking place.
I recently heard a story of a man who had been shot six times defending his country, only to be hit by a drunk driver six or seven years later, and died. Understanding this concept has probably only added to my angst. In turn, I have had to have many clarifying talks with friends and do a lot of apologizing for ways I have lacked in the relationship.
I will say that the concept of relying on God’s sovereignty, however; has also helped me to venture back out into the world when my mind screams, “IT IS NO LONGER SAFE.” I realize if I claim to follow Him, I also claim to follow the truth about Him: that HE ultimately is in control. We are not.
Most recently, someone told me that when she looks at me, she feels that “I am so far removed from what happened the night of the crash.” This reality, however, is so far from the truth. It is her reality. Not mine. Maybe if I didn’t have a colostomy bag hanging off my abdomen, or need to pee out of a catheter, I could relate. Maybe if I could go back to work full-time, or I didn’t fear developing pressure ulcers from sitting in one position too long— or as a result of my abnormal gait— the crash and its negative effects would feel more distant. Maybe if the trauma didn’t result in random tears at any time of the day after seeing, or hearing, something that triggers a bodily sensation, reminding me of that night, I could feel more removed. Or just maybe if I felt every part of my body, or didn’t need to park in the handicapped spot because I get tired when walking to the door, suffer from severe nerve pain, or wobble a little, I would be able to compartmentalize what happened to me.
But you see, I can’t. I have to admit that sometimes I forget these details when I am engrossed in good conversation or when I am really enjoying myself. For a brief moment in time, I forget that I poop in a bag, pee out of a straw and I can’t feel about 50% of my lower body. I forget that I am no longer considered “normal” even if that is the way I am perceived. As some would say, I am now differently-abled.
I am, however; painfully aware that all a person can see when they look at me is that I wear an Aircast on my left foot and Kinesio Tape on both feet.I am asked all of the time what “I did” to hurt my ankle, foot or leg. Conveniently, people don’t see the scars that line my body or the medical supplies in my purse. They don’t feel the physical pain or the frustration that life just isn’t the same. I desperately want to look in the mirror and see my belly button for goodness sake. The colostomy, however; is something that reminds me of my trauma and I haven’t fully processed that yet.
I have heard more than once that humor is the best medicine. I agree, so I make fun of myself a lot, and this helps me cope with the reality of the colostomy and what has happened to me. I still can’t bring myself to think of my colostomy as feminine, however— which I refer to as “Osty”— because I don’t want to admit it is a part of me. I want to keep a healthy distance from my dependence on the colostomy system, and at the same time appreciate the services it/he provides, because I desperately want my organs to be put back together again and achieve a level of normalcy. I remind Osty that the clock is ticking and that he won’t be around forever— even though there is no indication that this is entirely true.
By the same token, it makes sense that people would perceive me in a different way than what is really true. So many people with invisible illnesses feel this way. The reality is that people don’t see me waking up in the middle of the night like clockwork due to pain, restlessness, neuropathic tingling in my feet, or because sometimes I can’t tell if I need to pee. They also don’t see me vigorously researching anything and everything about my injury looking for the miraculous, or the next “thing” that will take me to the next level of recovery. They don’t see me crying in pain as my husband rubs my back because when I am stressed or don’t get enough sleep, I struggle with painful nerve spasms that feel like someone is electrocuting me.
I share these things not because I expect, or want pity. Honestly, I loathe the idea that anyone would feel sorry for me. I DON’T feel sorry for me. And I don’t ask WHY because I believe God has already answered the why. This concept is talked about in previous posts. At times, though, I do struggle with the WHYS of God’s specific timing with certain things, but NOT the “why did this happen to me?” feelings. If I had to go back in time and do it all over again, I would because the benefits of what happened as a result of the crash (also talked about in previous posts related to prayer) are greater than the losses, even when the losses seem to engulf me.
One of the only expectations I have from other people is for them to have compassion for my experience, as I have compassion for theirs, whether we understand each other’s struggles or not. Compassion shouldn’t just be demonstrated when another person understands or agrees, but even more so in those moments when you don’t understand, and you don’t necessarily agree. I also don’t expect people to understand exactly what I’ve been through. How could they? This would be an unfair expectation because there is no way I, or anyone else, can know exactly what another person has been through.
But, WE CAN ASK to know someone and his/her story, or to be known by that person.
Another expectation I do have— that I was told is a healthy expectation from my sister who is a family and child psychologist —is the desire for people to relate to the emotions I have had and still feel: loss, sadness, joy injustice, hope, pain, disappointment, victory, faith, grief. etc. That person may never know exactly what I, or anyone else has been through, but surely they have felt all, or some of these emotions at certain points in their lives.
The main point I am trying to get across is that the consequences of someone else’s actions are something I deal with everyday. The fact that I have had a “great recovery,” considering the devastating injuries I sustained, DOESN’T undermine the struggle of every day. And the struggle DOESN’T diminish the possibility of having a healthy and positive response. These things do, and can coexist.
So, this brings me to the present day. After the emotional talks with a good friend, I realized that I had run out of catheters. This is quickly an emergency because without them I cannot urinate. I called my general practitioner and immediately requested a new prescription. You see medical companies are funny. I am literally rationed up to eight catheters a day— which is above the norm, by the way. The average person urinates approximately six times a day. If that person runs out of supplies shy of the month or three-month order from their typical medical supply company, he or she is well, out of luck. The insurance will not cover more than what the prescription says. Also, because medical supply companies charge double or triple what the insurances actually pay, paying out- of-pocket for a catheter from them would make little sense. Through my supply company, the out-of-pocket cost is $5.45 per catheter. The local pharmacy charges $2 per catheter out-of-pocket. I ended up choosing the latter.
I know what you’re thinking: Just ask for a higher number of the needed medical supply on your prescription. I did that already. Additionally, insurance companies have a right to deny a number higher than what they determine is the norm. Medicare— which I now qualify for because I have been disabled for over two years— will only approve 200 catheters a month. That would equate to a patient using 6.45 catheters a day. Currently, Medicare is my secondary insurance because I am also covered under my husband’s insurance. My prescription is written for eight catheters a day.
In addition, last month, I contracted yet another UTI— which is common in spinal cord injury patients because every time a catheter is introduced into the urethra, new bacteria is also introduced into the urinary tract. In fact, my neuro-urologist told me that on a quick UTI test at the doctor’s office, it will ALWAYS look like I have a UTI because my bladder is now colonized with bacteria from self-catheterization. The only way to actually tell if I have an infection is to wait for a culture to confirm E-coli or other bacterial growth. With a UTI, a person feels the urge —and really should—urinate more than he or she typically would in order to flush out the bad bacteria.
As a result of the horror of running out of catheters, I needed to make an emergency stop at the local pharmacy to hold me over until I would be sent my normal shipment at the end of the month. By the time I arrive at the pharmacy, I feel frazzled and extremely vulnerable from the emotional talks I had just had with a good friend, the shame of using too many catheters, and also the fear and frustration of dropping $200 plus dollars that my husband and I don’t readily have on-hand just so I can use the bathroom. I mean, paying to pee feels cruel.
Upon arrival, I park in the handicapped spot closest to the door. No one is around, so I decide to answer some messages and talk to a friend who I haven’t talked to in a while. I really needed a friend in that moment. After about ten minutes, I immediately look up randomly and see this elderly lady walking from the pharmacy. She is staring directly at me. I feel uncomfortable, so I look away and begin scrolling through my phone once again. I decide to put my handicap placard up at that moment as well—because it is illegal to drive with one. I decide to finally head into the pharmacy, and as I step out of the vehicle, I notice the same older lady still glaring at me.
I head to the pharmacy door, which is only a few feet away, hoping against hope she is not waiting for me. Immediately, the woman confronts me and says “Did you know that you are taking up a handicapped spot?”
“Yes, I do,” I reply. “I put up my placard and I am handicapped, and I have a right to park here.”
The lady retorts back, “The time it took for me to go in and come out of the store is the time you were on your phone taking up that spot.”
“I am sorry I was on my phone ma’am,” I say a little more sternly. “I am handicapped and I have a right to park here.” But my words don’t seem to be getting through to her. Her face is tense, her tone defensive.
She continues, “It is just really unfair, because you were taking up a spot and were on your phone.”
I realize she is not hearing me. I am LEGALLY parked in a handicapped spot. I had informed her that I am indeed handicapped, and this should have ended the conversation. I got to the spot first and I had a right to park there. This altercation reminds me of hundreds of scenes in Christmas movies where people are fighting over the last toy on the shelf. Yes, the woman has a right to feel frustrated that I got to the spot first, but she does not have a right to take out her frustrations on me. I got here first fair and square. Also, there is no time limit on how long someone who is legally handicapped can take up a spot. It’s also not like I had just borrowed the placard from my grandmother, which WOULD be illegal. All of my grandparents are long passed.
I just want to get away from this lady. I feel accused. I feel hurt. I feel bombarded with accusations. I feel even more vulnerable than I did upon arriving at the pharmacy. So, instead of asking her what is unfair, I say, “I apologize” and turn away from her to walk inside.
While inside, and as I stand there with the cashier, I can no longer hold in my tears. I burst out crying, but hide my face from her. Once the cashier is done ringing me up and hands me “the most expensive straws I will ever buy,” I quickly look away and make my way out the door.
I feel caught off guard. I feel judged. I feel angry for not standing up for myself. Did this older lady judge my appearance like so many others do, and determine that I surely must have been abusing the system because I look young and healthy?” I wish I would have asked her exactly what was unfair: Was it unfair that I took up a handicapped spot and shouldn’t have been— basically being accused of doing something illegal? Or was it unfair because she felt I acted in an inconsiderate manner as a FELLOW handicapped person by taking up the space and using my phone the entire time? The latter would have been believable, and that is why I apologized.
I talked with a spiritual friend the other day and she asked me why I apologized. She explained, “Erin, you had no reason to apologize. You didn’t owe her anything and you don’t have to justify yourself.”
The truth is I could see the woman stumbling to her car. Although, she was literally parked in the space closest to my right and only a couple steps from my car, I felt empathy for her. I felt compassion because I DO know what it’s like to struggle when walking short distances, feel out of breath easily and at times feel like my body is dead weight. I can relate. I have lived it. So, if me parking in the spot closest to the door and using my phone when someone else less mobile than me needed it for those ten minutes, I can see the validity in her case. I apologized to her for that reason. I wanted to show her grace and understanding, although I didn’t owe her anything. I wanted to show respect. I still wish I would have asked more questions, though. Truthfully, she had no right to question me. My situation is also none of her business. I can choose to share my experience, but I don’t owe her that. Her feelings of injustice, or helplessness, or frustration are her feelings. I am not responsible for carrying other people’s problems on my shoulders. As a self-proclaimed Christian, I am only responsible for showing the grace, compassion, respect and concern to others that Jesus displayed during his lifetime.
With regard to my handicap/disability placard, I legally own, and use one. I have misplaced it once or twice and I regretted that mistake fully. I’d like to think that I have enough integrity as a person, that if I didn’t need the placard, I would not be deceitful in any way and I wouldn’t use it. The handicap placard, however, not only is a Godsend, but alternatively is also one more reminder of the effects of that cold November night in 2014, and the negative consequences of someone else’s decision to drive drunk.
I want to challenge an idea right here: Some people think there is no fate worse than death. Unless you are a Christian, then death becomes the ultimate goal. I would argue that a fate worse than death is living your most feared reality. And, your most feared reality could be the death of yourself or a loved one. It also may not. Think about that for a second. What is your biggest fear? Now imagine living that not only once, or for a moment, but instead every single day. Would death still be your most feared reality or what you just imagined? I also think death is sometimes God’s grace to people because surviving certain tragedies and living with the consequences: physically, emotionally, mentally, spiritually, financially, and even legally may be too much for people. I have to admit, that sometimes in my own grief, I wonder what it would have been like if I had died the night of the crash. I struggle with that thought, though, because I know that I need to tell my story and that God isn’t done with me yet. I have unfinished business and I know I wasn’t ready to die, no matter how much I long to go home and to be with my God. Maybe that’s why God didn’t allow me to leave this earth: Because living would bring him more glory than my death would have.
I sometimes feel that living with the colostomy for the rest of my life would be my most feared reality. I would never wish paralysis on anyone, even my enemy. But a stronger fear than that would be not accomplishing something with my story beyond the tragedy. This would be living MY most feared reality. Suffering is never in vain, but if my suffering didn’t, or doesn’t, add anything positive to the world, then I would feel tempted to believe that I had indeed suffered in vain.
The preconceptions of my reality, the ignorant questions people ask, or just the feeling of being completely and utterly alone in a world that no one around me understands can feel quite overwhelming at times. Those are things I have to grapple with. I also have to grapple with the intense feeling of loneliness. This reality, however, is teaching me to demonstrate even more grace to people whether they deserve it or not. I know I must have said stupid or insensitive things to different people when they were suffering. And if you were one of those people, I am so very sorry. I now know the error of my ways. I only hope this post will help you, and others, to approach other people’s suffering with the grace and understanding Jesus displayed— to people who were completely unworthy, no less.
So, to the woman who chastised me for legally parking in the handicap spot: You have no idea what I’ve been through and you really have no right to judge. I am sorry that I was unaware of how inconsiderate being on my phone and taking up a handicapped spot could be for someone like you— someone who really needed it. I will do my best to be mindful of this in the future. I would also encourage you to ask more questions before making a judgement, if that is indeed what you were doing. If you weren’t judging my appearance and just suggesting mindfulness, thank-you. Thank-you for reminding me that there are others who need the same grace, compassion, understanding and forethought I hope those around me will have when approaching my needs. Maybe next time, I’ll have the courage to share my story with you as well.
If you like this post and want to read more, please check out the previous blog post in the series: “The Day I Chose Life and the Biggest Lesson Yet.” Also, please follow me here, on Facebook and Instagram at God Sends Me Hearts and Peeing Is Overrated— a page dedicated to the documentary that is dedicated to sharing my story and prayerfully will be released next year!
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