I am often asked when did I get to where I am with respect to acceptance of the accident or how do I constantly manage to make light of challenging situations with dark humor even when things are constantly thrown my way as anyone who is disabled can relate to?
Well, in short, I’m most definitely crazy, but above all I’m a CONSTANT SCIENTIST in my own life … Testing my limits and seeing how far life will take me.
When I think about everything that I have been through I think it is all worth it if I can help even just one person on this earth with advice, humor or whatever they may need. Oftentimes I end up experimenting on myself for other people. I’ve tried countless measures to improve my life in so many ways and here are just a few examples to demonstrate how I push myself on a daily basis:
1.) Mind & Body Altering Drugs
When I was first injured, as with many spinal cord injury patients, I was put on every drug under the sun to control my high blood pressure, low blood pressure, pressure sores, excruciating neuropathic pain, bladder spasms, blood thinners, etc. I think I was taking near 15 prescribed medications per day. As the months rolled on, in addition to dealing with the nightmares of being paralyzed, I could barely think, my hair was falling out, my nails were brittle, my skin was doing all kinds of crazy things, and I was flat-out miserable.
Most people tend to trust their doctors, but I was raised in a family that promoted curiosity and independent thinking. I found myself constantly firing doctors because they were just going through the standard practice motions of treating spinal cord injury patients. Since every injury is different it can be very challenging to treat patients. I simply could not accept this was going to be my life and how I was going to feel for years to come.
I made a decision with my family to actively pursue alternative therapy doctors, interview medical professionals until I found ones who would really listen to me, and work with the goals I was trying to accomplish. Over time I managed to reduce the drugs I was taking to 2, but it was a long and hard road.
It would take me months of trying different medications, going on and off others, and methodically taking detailed notes in a journal every day of how is feeling, effects of how a specific medicine was interacting with my body, etc. I tried a variety of diets, supplements, and natural remedies to heal my body.
Naturally, many medical professionals deterred me from this course of action as they were not familiar with what I was doing. As any scientist will tell you, you have to form a hypothesis and create an experiment around it. I did this for every aspect of my life, especially as it related to drugs. Eventually, I found the right combination of drugs, supplements, and diet that worked for my body. Don’t get me wrong, this was a frustratingly grueling process, but well worth it in the long run. When I say long run, it took me years of constantly experimenting with my body. Some experiments failed and some were successful.
If you do not try new things and keep doing the same thing over and over again expecting different results, then you are your own definition of insanity as defined by Einstein!
2.) Rehabilitation Therapies
When you are newly injured there is a standard protocol for spinal cord rehabilitation in the United States, which falls drastically short of what your body actually needs in order to reconnect neurons to fire together, thus creating change. Chronic inflammation is a huge issue, which is also not addressed in the slightest in Western medicine. For the first few months I definitely followed the standard rehabilitation protocols laid out for me when I was living in a rehab center trying to gain my strength back. Over many months I realized I was not getting much return back for the effort I was putting into it. I am what they call a “Complete” Spinal Cord Injury. This means there are not many surviving functional connections down the spinal cord below your level of injury, which oftentimes results in minimal motor function recovery.
Unfortunately, 7 years later I have not regained any motor function recovery, but in the early days this did not stop me from trying. When I was first injured I was living in Miami and I participated in multiple protocols to try my damnedest to improve motor function recovery during my first year after injury.
I rigorously engaged in activities such as:
These are just a few of the many therapies I tried, which are not offered to spinal cord injury patients by doctors. Even though I did not recover any functional movement back I tried and continue to try to improve my life in any way possible.
7 years later I’m constantly researching and try new ways to reduce the constant neuropathic pain I live in, which feels like burning pins and needles throughout my entire body 24/7. This is an active effort and takes time, patience, and determination. I am at a point where I have found that guided visual meditations work quite well for me with reducing pain in my body. One must remember that pain is simply a signal in the brain, and therefore it stands to reason that one can train their brain to rewire connections in order to feel things differently. While I still live in pain I have so many techniques I employ on a daily basis to constantly train my brain to think differently.
Essentially, I am constantly pushing my brain to think differently!
3.) Life Threatening Spinal Cord Cyst
Two years after I was injured I started to lose function very slowly in my respiratory system. I was having trouble breathing. I went to see countless neurosurgeons and it was discovered that I had an arachnoid cyst in my spinal cord that was ascending upwards around C-5. Eventually, it would reduce the already minimal function I had in my upper body and kill me.
I cannot tell you how many neurosurgeons turned me away and would not operate on me until I started to lose functional ability. This was absolutely ridiculous to me and my family. My father, one of the most brilliant men I know, traveled all around the world for me to find a group of neurosurgeons in China at the People’s Liberation Army who were intimately familiar with cysts in the spinal cord.
They actually performed the surgery quite regularly where they opened up the spinal cord from behind through performing a laminectomy, lanced the cysts, cleared out much of the scar tissue debris in the spinal cord, and performed a spinal decompression. I had an amazing success.
Being my own scientist I decided to bite the bullet and move over to China with some of my family. Many thought I was absolutely insane moving to China for spinal surgery as most people think medical care in China is subpar since it is not a first world country. I was living on borrowed time and I had to do something. I made up my mind and decided to take my life into my own hands, and out of my doctors. So, I moved halfway across the world, performed the surgery, and it saved my life!
You can read more about this particular surgery and my time in China on my blog.
I figured I was probably going to die anyway, so why not take the plunge and try something different! Thankfully, this particular experiment worked out quite well 🙂
4.) Dare to be Different
It can be very scary in a situation like mine when you have so many medical challenges flying at you left and right. Trusting doctors is a natural inclination for many in this country as many folks assume these trained professionals know exactly what to do in complicated cases. Unfortunately, spinal cord injury is so involved because no two patients are alike.
It is not in my nature accept the first answer given to me by medical professionals. This can be quite challenging for many, which is why I spend so much time researching, and trying to help folks out in any way I can to improve their quality of life.
We only have one life to live no matter how challenging it may be. While I am constantly trying to improve my own it is so important to me to give back to those who are scared, don’t have the time, resources, know-how, or ability to always stand up for themselves.
I have been blessed with a wonderful and supportive family who have taught me to think for myself, but many are not so fortunate. So, it is my hope that after reading this article you reach out to me if you need help with improving your quality of life, talking, researching new therapies, etc. This is the best way I know how to give back at the present time in my life and I will do whatever I can to help those in need!
BE YOUR OWN SCIENTIST 🙂
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- My First Solo Trip with my Boyfriend as a Quadriplegic – The Art of Compromise - January 6, 2018
- CAREGIVING for Quadriplegic – Living in Fear or Trust? - December 10, 2017
- Danger: How Negativity About Disability Can Create Chronic Inflammation - November 18, 2017
- Spinal Cord Injury Sexuality: How I (Unexpectedly) Fell in Love - November 9, 2017
- How I Vacation as a C6 Quadriplegic - October 28, 2017
- My Lifelong Science Experiment - September 24, 2017
- The Game of Survival: Managing Fear and Health as a Quadriplegic - August 13, 2017
- Splashing Back into the Water: How I was going to swim again as a C6 quadriplegic - July 31, 2017