The other week I was curled up in bed for over 3 ½ hours dealing with what many who suffer from spinal cord injury go through on a regular basis. The bowel program. One of the unfortunate challenges with spinal cord injuries is the fact that you have no control over your bladder and bowel, which results in many of us having to use catheters to pee, suppositories help us go to the bathroom, and so many more in between intricacies that would probably make your head spin if you’re not familiar with living a life with a severe disability.
In any event, I plan my life around drinking enough water & eating just so I can make sure that aspect of my life goes as smoothly as possible. So, I can create a routine. However, sometimes there are days things just do not go according to plan. You may have your family or loved one or caregiver putting your finger up your bum to help you go to the bathroom for hours on end while simultaneously trying to handle the fluctuating blood pressure, sweating, excruciating burning pins and needles throughout your body as you intentionally attack your body just so you can have a normal bathroom day. This is life. This is the way it works after spinal cord injury. That’s okay and it’s really how one handles the mental aspect of dealing with such issues that defines the rest of your day or week or the months to follow.
I used to suffer from severe anxiety when I would have days like this, but now I know I just have to be patient, read a book or watch a movie while I lay there in bed trying to perform such a simple task many of us take for granted who have fully functioning bladders and bowels. On this particular day I started to think critically about pain. I am no stranger to physical pain, mental pain, and the combination of both at times
I am often asked how I handle this. Where do I get my strength & determination to keep going when it’s one thing after another?
In short, I have mentally conditioned myself over 11 years to turn my daily pain struggles into purpose with the sole ambition of helping others realize that life is not over even when the seemingly darkest moment is upon you. I derive my strength from others positivity, family support, I’m sure a little bit of genetic grit somewhere thrown in there, and the constant urge to push through what feels like insurmountable challenges at times.
Quite frankly, it’s exhausting. It takes up nearly 1/3 of my day to just power through, but I do it. As I write this article I woke up sick as a dog and spent nearly an hour staring at the screen. I don’t have the luxury of lying in bed all day to get better because I would get pressure sores from staying in bed too long. So, I was forced to get up in my chair. Sure, I could have laid back all day and done absolutely nothing, but what I find gets me through moments where I just want to crawl on the couch and wait for tomorrow to come, is the fact that I know I may be helping others appreciate the fact that they are not alone. I do appreciate when I need to take a moment and scale back my day, but sheer determination keeps me going to make a difference in the world.
I don’t want to wake up at the end of my life and realize that I have just worked my ass off, but I want to make an impact in people’s lives in some way, shape or form. My husband and I are not going to have children, so I feel this incessant drive to keep going. I am fortunate because I have the innate ability to move from project to project without losing focus. I retain information quite well, learn quickly, and “just do it” as Nike would say. Please don’t misunderstand, this is a daily battle I take on in every moment because chronic pain can bring an ordinary person to their knees, and disrupt their entire lives. I appreciate we all handle pain differently.
I have had the distinct pleasure of getting to meet and know so many others around the world with severe disabilities and it is those people who struggle with the most challenging of circumstances who seem to shine the brightest. They give me strength to push forward when my body feels like it’s on fire because I know I’m affecting change in some way shape in somebody’s lives – at least I hope so.
Cervical Cancer
This brings me back to a memory I don’t often speak about. I often discuss topics of pressure sores, my year in bed, spinal surgeries, bladder and bowel issues, etc., but not when I dealt with an experience so utterly terrifying and painful that it changed my entire outlook on how I live my life today.
Back in 2012, two years after my accident I had not been to see a gynecologist due to the tremendous amount of secondary complications I was facing at the time. When I finally found a break in my schedule to go get a Pap smear my gynecologist called me and told me that my Pap smear results were abnormal. I had developedStage 1 cervical cancer. Of everything I have been dealing with I completely forgot about my cervix. Go figure 😉
We made quick work of scheduling a surgery to cut out the cancer cells within my cervix. Thankfully the surgery went quite well, but within a week I started developing terrible headaches. To make a long story short it turned out that the surgeon who gave me an epidural, as I was awake during the surgery, used a needle gauge too large and I started leaking cerebral spinal fluid. In addition, it felt like my lung was collapsing and I could not breathe. Hands down, this was probably the most painful feeling I’ve ever had in my life. I thought the two were seemingly related. I was very wrong.
Surprisingly, fixing a cerebral spinal fluid leak is not a challenging procedure as they basically take blood from your arm and insert it into the spinal column to essentially clot the cerebral spinal fluid leak. I remember being in the ER where they had to sit me up and tie me to a pole because I had to remain very still as they inserted this giant needle into my spine.
Once the procedure was over my lung still felt like it was collapsing, but one challenge with spinal cord injury is when you get too many doctors involved. Too many cooks in the kitchen as they say, which results in a dish that is not very cohesive. Due to my lack of physical sensation these doctors just couldn’t diagnose what was actually going on with me. In short, I developed a blood clot in my leg, which I could not feel at the time due to the fact that I was lying flat for cervical surgery for too long. The clot broke off within my leg and traveled into my lung resulting in a pulmonary embolism.
I was suffering from a pulmonary embolism for about 48 hours, which the doctors, to this day, don’t know quite how I survived because pulmonary embolisms in your lung have an extremely high mortality rate. They quickly got me on heparin, a blood thinner, and sent me to the ICU for weeks on end.
One would think my issues would have started to clear up at this point, but my body went into full rejection and my blood pressure was skyrocketing from some sort of pain response in my body, called autonomic dysreflexia. My blood pressure would yo-yo from 200/180 down to50/30 in the blink of an eye. The ICU nurses and doctors were terrified because they could not figure out what the source of stress on my body was.
To condense an extremely long novel, it boils down to this:
The surgery I had justhad on my cervix, which was trying to heal, was unable to do so due to the fact that they put me on blood thinners for the pulmonary embolism to prevent clotting of my blood. When you get a cut on your finger or inside your body you need your blood to clot in order to heal. However it’s a catch 22 when you simultaneously have a pulmonary embolism and are trying to prevent blood clots while heal wound.
I couldn’t sit up, so lying in bed in the ICU for over a month was causing me to literally bleed back into my body. I had so many doctors at that time and none of them could figure out what on earth was going on with me. It was hands down the most excruciating feeling of my life, more so than waking up from spinal surgery in China with only ibuprofen. I thought I was going to die and I was prepared todo so because I accepted that was part of life. One day I passed the giant blood clot through my body (no, I’m not to give you the gory details on that one because I promise you – you do not want them),and all of a sudden my body had healed itself!
In hindsight, many of the doctors tried to trip over their own words, save their own butts, avoid litigation I’m sure, but took all the credit for figuring out what was wrong with me when in reality my body decided to take care of itself. The body is an incredible thing as long as we don’t abuse it because our bodies really do to keep us alive in the most fascinating of ways.
Lessons Learned
One of the unfortunate side effects from this experience was the fact that they pumped me full of morphine for weeks on end, which resulted in an increase in my burning pins and needles constant nerve pain I permanently feel. I used to wake up with a 3 out of 10 pain level and now I wake up with a minimum of a 7 level pain level. Unfortunately, this is a rare side effect of morphine as this painkiller does not act on the same pain receptors as nerve pain does. I was one of the unlucky few.
It took me nearly 2 years to adjust to this new normal in my life of pain, leaving aside all of the other surgeries for a moment, because trying to let the brain catch up to the body with respect to coping mechanisms is a very long and grueling process. I had to learn to meditate every day, sit up at my computer screens even though my body was on fire and get to work, and learn to take several moments for myself a day away from everyone else to just sit with my new life.
I was already paralyzed and I had accepted that even though I respect many folks with spinal cord injury who are holding out for a cure, I choose to live my life with the “Right Now” philosophy because I don’t want to wait decades for scientists to find a cure only to realize I didn’t live the last several decades of my life.
WITH PAIN COMES PURPOSE –Every time I underwent an experience that caused more pain in my life it re-ignited my spark to do more. I know no one would blame me for sitting around all day for everything I go through, but I’m just not that human being.
There’s enough cruelty and ambivalence towards our fellow human beings in this world and I did not want to become just another person lost in the mix of feeling sorry for myself. Yes I have days that are overwhelmingly excruciating, but I go to sleep and wake up the next day, and try again. Sometimes I’ll have a few days that I am not as productive, but then I’ll have months where the ocean calms down and I can just cruise the high seas as they say to get to my destination.
The point is that we all have mentally traumatic or physical experiences we deal with throughout our lives. I personally think everyone in life should have their own therapist just like people have their own tax accountant. If you don’t have someone around you to talk to, find someone. It’s up to you. Life is not going to hand you what you want, you have to go get it. It’s not always going to work out and you may fail 50 times in a row, but maybe it’s that 51st time that you finally start to gain traction.
This is how I approach my life and the philosophy I live by. Sometimes I throw as much against a wall as I possibly can and see what sticks. “When you are in hell, just keep going,” as Winston Churchill famously quoted. It’s true. You may not be able to see beyond the trees on a particular day, but eventually you’ll see the forest if you keep on trying.
I’ve taken my pain and my experiences to drive forward to help others, partner with national disability organizations, work with my elected officials, work full-time, help others in their health insurance battles, pay it forward in any capacity I can on a daily basis, and now, trying to find a job in a Fortune 500 company to promote diversity and inclusion. Who knows if a company will hire me, but I’m at it every single day. Just yesterday I wrote 98 people on LinkedIn who I found interesting. It took me 8 hours and I may only get one or two responses, but it’s that ability to keep pushing forward into the unknown that makes life so interesting.