Emotions (My Story)
I’m not going to sugarcoat it: living with ALS can really suck sometimes. I think that everyone going through this experience likely has their own way of dealing with difficult emotions, but I would like to share a little bit of my story as it relates to grappling with the emotional challenges of living with ALS..
For most people death may feel like a far off thing, and although they know it will happen to them one day they push it from their minds like a myth. When you are diagnosed with ALS, death feels far more real and whether you like it or not you are suddenly more aware of its proximity to you. When I was first diagnosed with ALS the thought of slowly losing function and eventually my life was a difficult thing to come to terms with the possibility of, and worry and fear were at the forefront of my awareness. The weight and intensity of these emotions was too difficult to bear at that time however, so I tried to push them from my experience.
I did this in several ways, and one of them was to play a lot of video games (my tried and true escape mechanism over the years.) I also protected myself from the worry and fear with the hope that I would return to physical wellness. But to be honest, it didn’t feel so much like hope as it felt like a certainty. It is closer to say that I knew that I would get better, as if I might will it to happen. I dove into research with a fervor that felt like fighting for my life, spending all of my time and money on tests and supplements that seemed to hold promise for improving my health.
Both the video games and this strong, almost belligerent hope backed by action did a good job of numbing out the emotional intensity of my experience in the beginning. It felt as if I was building a dam to keep the worry and fear from flooding into my experience, and the busier that I kept myself the more solid and a safe that wall seemed to become.
Despite this, there were signs that not all was balanced in my emotional life. I noticed myself becoming emotionally flat, as if the dam keeping the fear at bay was stopping enjoyment and happiness from flowing into my experience as well. I also began to sense that spending all of my waking hours on the computer doing research and in playing video games was beginning to have a negative impact on my energy levels and enjoyment of life. At the end of each day I found myself mentally exhausted, but what drove me on was the worry of what might happen if I slowed down. I felt I had a head start in my race against ALS but to slow or stop my research would mean losing time, and quite frankly I didn't know how much time I had.
Building Up and Breaking Down
There was so much anticipation each time that I would research and order a new supplement, and I would wait eagerly for each to arrive with a rising sense of hope. My inner dialogue would go something like this: “This could be the one! This might be the supplement that turns my health around!”
But each such time that my hope swelled, it deflated again when I didn’t notice an improvement from the supplement. Time and time again this happened over a period of months, and tiny cracks began to form in the dam that was keeping my emotions at bay. All of the time and effort I was spending didn't seem to be paying off and my frustration was mounting. After a while I became tired of fighting and hoping and striving only to have my efforts to find health solutions yield nothing. Eventually I simply had no more energy continue on with researching new supplements and a defeated part of me simply gave up. It was then with a sigh that the dam holding my emotions back cracked open, and all of the emotions that I had been trying to stuff down and to push away began to pour out.
I cried, frustrated and angry at God. How could life be so unfair as to put me in this position at the age of thirty, when I should be working, dating, and enjoying my life to the fullest? "I'm a good person with a kind heart" I thought, and here I am living with ALS while slowly losing my physical function. None of it seemed fair.
As the days passed, sadness and self-pity were not my companions so much as a constant worry that followed me like a shadow. This worry threw a darkened shade over my experience, buzzing like fearful radio static in my mind. Up to this point all that I had been doing in researching supplements I had done under the assumption that I could use them to stop the progression of ALS; that I would stop it. Now that I had tried all of the supplements that I could think of and ALS continued to run its course I felt vulnerable and at its mercy.
For months I was burdened under the weight of this worry, and a part of the reason was simply that I had too much free time. Given the physical decline I couldn't work, and the hours spent researching supplements up to that point had basically been my job. I didn't have that research to occupy myself anymore, and I wasn't even finding the same enjoyment in playing video games. This left me with lots of free time to dwell on my feelings and to remain caught within fearful circles of thought.
What finally started to get me out of this slump was that I simply got tired of feeling like crap. I was tired of feeling sorry for myself, and even in the midst of this emotional turmoil I began to wake up to the realization that this brooding worry wasn't serving me in any way, and it certainly didn't feel good to experience. In spite of this challenge I wanted to find a way to use my time in a way that felt good, and to get back to enjoying life again.
I had been a spiritual seeker most of my life and returning to a daily practice of meditation helped to calm my mind and ease my emotions at this time. I began spending more time in nature, rolling around our area and exploring in my power chair. I also started writing the poetry which later became my self-published poetry book Seeds of Light Sown. In essence, I began to fill the hours of each day with things that made me feel good and by doing this fear and worry found less of a foothold in my experience.
It was a period of expansion and spiritual growth for me, and I increasingly began to realize that running from emotions as I had been doing wasn't serving me. Even before the ALS diagnosis I had a tendency to numb my experience with alcohol, weed, or video games and I didn't want to waste my time anymore. Those crutches I had to used to escape from difficult emotions had never really worked anyway, and I decided that it was time to stop running. It was time to allow myself to feel all that I had been trying to run away from for so long.
Clear Air and Fresh Sight
I have learned that there is a fine line between consciously experiencing your emotions and allowing yourself to be swept and carried along in their current. Perhaps there is a place for both, but at this time in my life I wanted to experience my emotions in a conscious way and let to them flow through me.
It was spring, and I would sit outside for hours each day in nature just being with myself. Without my usual distractions the emotions began to bubble up, and as they did I allowed myself to witness and to feel them as they arose. I welcomed even the difficult emotions and allowed them to be a part of my experience, not trying to push them away. The funny thing about this is that by allowing the emotions to be a present part of my experience I was also giving them permission to pass through me and to move on. Over a period of days and weeks so many of those stuffed down emotions rose to the surface for me to face and experience.
To be completely honest, it felt terrible. It was like feeling old emotional gunk bubbling to the surface that had been pushed down for so long that it had gone sour. It took quite a bit of bravery to allow myself to consciously feel all of that; to experience all of the fear and worry, the hurt and anger. To open up to feelings of being abandoned by God, the feelings of inadequacy of frustration and failure. Over the days and weeks so many textures of emotion rose to the surface, and I did my best to greet each of them no matter how difficult.
After practicing this for a while something important began to shift in my experience. I felt like a burden was being lifted, leaving me feeling clearer and lighter than I had before. It felt as if I had been seeing the world through broken glasses, and only now that I tossed them aside did I find that I saw better without them. Through these fresh eyes I began to experience more joy and appreciation for life than I had in some time. My world was infused with a felt sense of being alive and new.
Looking back on that time I now see that in part I was letting go of a need for control, and also learning the hard lesson that much of the control I thought I had was just an illusion anyway. I was learning to let my reality be exactly as it is without the need to fight against it or against myself in the process. In allowing myself to experience the whole range of my emotions I was also learning how to be more present and compassionate with myself while going through this difficult challenge.
At the time of writing this it has been about eight months since I began to make a practice of consciously feeling my emotions as they arise. It is very much something that is still a learning process and I sometimes struggle to put this emotional acceptance to use. The challenge is made more difficult by the physical deterioration with ALS which can be pretty relentless. The level of function that I have learned to accept today may not be the level of function I have tomorrow. Those of us with ALS are therefore constantly tested to find peace within in the storm while physical function is being taken away from us. It is an experience of great challenge that is difficult to describe unless you have experienced it, and I hope you haven't.
But even through this challenge I feel myself growing personally and spiritually at such an accelerated rate, and more joy, love and peace are flowing into my experience. The contrast between this and the seemingly insurmountable obstacle of living with ALS has created an experience of my emotional life expanding and contracting like the sensation of breathing. On days of expansion I deeply breathe more goodness into my reality, and on more difficult days I contract back into worry and fear. But you know what I have found to be so beautiful about this journey? I find that the fear and worry increasingly have less power to affect my experience, and despite the physical limitations I now feel more free than I can ever remember being before.
This in part is because I do not cling to good emotions and I do not try to push away difficult ones. Emotions are ephemeral things that cannot be held anyway, always slipping through your fingers when you try to hold them or lingering when you wish they would leave. By learning to accept all that I feel at any given time I am learning to ride the waves of life with greater grace. I am learning to love myself whereas I didn't even particularly like myself before, and I shower myself with as much love as I am able knowing how much of it I need during this difficult experience.
If there is anything I would like you to take away from my story, it's this: it is possible to find peace, love and happiness no matter how difficult the circumstance you are experiencing. I'd like to encourage you that if I can be going through this is intense challenge of living with ALS and be happier now than I can remember being, whatever circumstance you find yourself in I believe that you can too.
If You or a Loved One Has ALS:
If you or a close family member or friend has ALS I know that you are strong though I may not know you. ALS forces us to find an untapped strength to deal with its challenge that we didn't know we had. There is no right or wrong way to do this and sometimes all of it can feel hard, trust me I know. I understand that the difficulty of this experience can make you feel tired deep in your bones and at times make you want to just give up. It can feel lonely and like no one understands, but I do understand. My heart is with you during this difficult time.
I want you to know that you have a friend in me, and want you to feel free to reach out if you would like to talk.