I was lying awake last night battling my arch nemesis “Ms. Insomnia” and she engaged me in a fight of a lifetime. I couldn’t move, but my mind was running through a jungle fighting for my life as she tried to attack every fiber of my positivity. She ran me up a tree at an alarmingly pace and as I clung to the tree branches for dear life, and tried not to let her get the best of me, she managed to claw me back down to the ground. While I was being mauled by this insidious monster I laid there completely paralyzed unable to move as she had had her way with me. By the time she had had her fill she left me battled and bruised. As I was lying on my back gasping to breathe I decided to give in and just sit with my swirling thoughts.
I was trapped in my bed wide awake, angry, and frustrated that she had gotten the best of me as she so often does. Many folks with spinal cord injury share the same fate night after night as I do whether that be from stress, anxiety, intense nerve pain, involuntary muscle spasms, etc. I couldn’t help but think about the concept of happiness in life as I laid awake for two hours struggling to desperately get myself back to sleep.
I kept pondering what is this idea of happiness anyway? I feel like it’s always wanting more, which makes me lose perspective and mentally spiral out of control on a regular basis. This idea of happiness coupled with creating hopes, goals, and dreams — when not fulfilled — can end up leading to endless suffering for many folks from all walks of life.
The question I kept asking myself is “Am I happy?”
The answer to that question is more complicated than initially meets the eye. Sure I broke my neck and deal with endless uphill battles on a daily basis, but I’m getting married to my love, I have a family that loves me, I have everything I need in life, which I realize so many folks do not, to not only survive, but live. However, I still have a deep sense of emptiness and unfulfilled void in my soul (this is what I was thinking to myself late last night.) I cannot understand why I feel this way. Is it perhaps because I, as so many other folks do, place unrealistic expectations on myself that I can’t possibly hope to meet? I keep myself busy and distracted on a minute for minute basis during the day, but late at night when I am completely alone with my thoughts trouble ensues. This prompted further reflection.
Several times a year I have a month or two where these deep philosophical questions completely engulf my thinking on a consistent basis. Several nights ago I was in a similar situation and I needed more information to ground myself, and create a more realistic perspective for my situation. I went on to several of my Spinal Cord Facebook groups and posed a simple question to folks. What are some of their goals are in life?
As I thoughtfully read through the countless responses an overwhelming number of folks had very noble and realistic goals of simply trying to find or hold down a job, keep a caregiver, heal a pressure sore so they didn’t have to be in bed all the time, and inspire others.
These heartfelt responses to my question prompted me to think about goals, hopes, and dreams. I think it’s absolutely essential for any human being to have hopes and dreams in order to find purpose to wake up the next morning. However, not to discount my own hopes and dreams, but I’m coming to realize that I need to dial back my definition of what brings me joy with respect to my present situation being paralyzed in a wheelchair. I see so many folks in wheelchairs do incredible things and you hear about them in the news or from a friend, etc. However, I find many of the folks who you don’t hear about who have been in bed for over a year and have the simple goal of being able to get up and not have to deal with all of the nightmares that come along with pressure sores to be real inspirations.
With respect to healing pressure sores I can personally empathize with some of the folks who spoke about simply wanting to get out of bed and heal a pressure sore that they had had for two years. I, too, spent almost a year in bed, and several years on and off from a giant pressure sore on my behind in addition to undergoing multiple surgeries.
(A few random funny photos to break up the serious)
This may sound strange, but at that time in my life, my definition of happiness was far more simplified and straightforward. This led me to actually be happier even though my physical condition in life was far worse than it is now. I had the simple goal of getting out of bed one day to hug a tree out in the forest. I kept my mind on that singular goal, ate a very specific diet to heal more quickly, meditated every day, read philosophy, worked when I was able, and kept my eye on the prize.
Eventually my pressure sore did heal, I got out of bed, I actually hugged a tree, and it felt sensational. Truly! However, as time passed and I was finally medically stable for the first time since my injury, about 6 ½ years later, my hopes and dreams naturally started to change and expand. I wanted more. I wanted to travel like a regular person, become insanely financially successful, do more, be more, more, more, more!!! Well, this has been a double edged sword for me. As I kept wanting more and trying to push myself I kept falling in and out of many depressions as I still do today.
The more I push myself the more I feel lost. Ironic isn’t it … the times in your life that can be the most demanding can offer you the most clarity. Presently I keep thinking my definition of happiness is being 100% financially stable on my own without the help of anyone and being able to travel the world with my love. These are the two external dreams I keep thinking will make me the happiest. However, as I constantly keep trying to push toward these goals I’m coming to realize that they’re not entirely realistic either.
Let’s take traveling for example, I see so many of my wheelchair friends fly here and there, take these incredible adventures, and while I am so happy for them, it also sinks me into a mentally unstable hole where I feel horrible about myself. What I don’t account for is that every spinal cord injury is different and we all face different challenges. For me, my skin is literally like “Princess and the Pea.” You can just look at my skin and I get a pressure sore. What does this mean for traveling? Well, I simply can’t sit on a plane for multiple hours on end and not expect to have some sort of pressure sore at the end of it.
(While I can’t take many plane rides the pool & ocean gives me an incredible sense of contentment)
This absolutely crushes my spirit because I want to further explore the world, but my body simply can only take small adventures at a time. Don’t get me wrong, I’m so appreciative for the small adventures I can take, but because I place so much weight on traveling being a “cure” for when I feel stuck in life I end up feeling more disappointed when I can’t do something. If I just change my definition of traveling for my situation things would probably go smoother for me.
Another example is working. While I do work professionally day trading I forget my limitations in my situation. On one hand it is great to ignore limitations, but on the other hand when I can’t live up to my own expectations I feel defeated. I forget to take into account that every day I need at least 3 to 4 hours to devote to care-giving from bladder and bowel care, shower, dressing, etc. I also discount the fact that I suffer from severe nerve pain and by the middle of the afternoon my focus is meager at best because the little pins and needles throughout my body are screaming at me to pay attention to them like a hungry infant. There are, of course, other obligations throughout the day I need to fulfill, which leaves several hours a day where I can really focus. Some days are great and some days are not so great. I appreciate more than words express the help my family gives me in so many ways, but feel like such a failure that I can’t do everything on my own. Again, this pattern of insanely intense hopes, goals, and dreams lead me down a dark path at times. I think it’s important to dream big, but also to live realistically. This is something I have struggled with for a very long time.
(No matter what, my mom always brings me down to earth … Especially when there is wine involved)
I have a therapist who I see on and off and she posed such an interesting question to me regarding the concept of happiness. She said most people make themselves miserable trying to be happy. This idea of happiness is a very new one historically speaking because for many millennia survival was the core essence of life. In modern-day society with all this marketing aimed at trying to get people to purchase things to make them happy and in this new technological era happiness can be complicated.
The question my therapist asked me was “Are you happy enough?”
A switch kind of turned on me when I thought about the idea of happiness in this way. Yes, I am happy enough I told her, but I told her I don’t feel like I am contributing much the world and that I feel like I am a burden on so many people in my life. She then mentioned to me that if the people in my life didn’t want to help me they wouldn’t. She told me to stop feeling guilty for people wanting to help. Such a simple concept, I know, but much trickier to get the mind to believe than meets the eye.
We, as human beings, all struggle to find a balance in life. Everything relates to perspective, which, ironically, we have full control of. We are our own worst enemies. Specifically with spinal cord injury folks, simple goals in life such as healing pressure sores, waking up in the morning, reducing pain levels, etc. are many things that many abled-bodied people take for granted. However, being paralyzed in a wheelchair in the United States is also taken for granted by many of us wheelchair users in this country as compared to being paralyzed in 3rd world war torn country. Everything is how you look at it – perspective is entirely controlled by a state of mind, not by outside surroundings.
It’s ironic that we spend so many hours a day trying to eat healthy, stay fit, protect our loved ones from dangers of the world, but when it comes to our mental sanity and happiness we neglect our state of mind on a regular basis. After a long day of work many of us just want to kick back on the couch, relax, read a book or watch TV, but we don’t think about taking 30 minutes a day to meditate or reflect on our mental well-being.
As for me? What am I trying to work on and achieve in life?
Simple – PEACE.
I have everything I need in life to survive and live a life that is happy enough. My biggest setbacks are naturally physical, but no matter the disability peace and happiness come from a state of mind. No amount of money, traveling, or things can help create a tranquil state of mind. All these material items can certainly make life less challenging, but look at the Buddhist monks who have nothing but the robes on their back — they find the most incredible peace in the world. Well, at least I think that’s what most Buddhist monks are like, but I will have to ask one and get back to you.
We are all works in progress. I will continue to work on not giving up, appreciate the small things in life, be thankful for what I have, and be open-minded to learn from people from all walks of life. The journey to find mental peace is a lifelong journey.