The Frustrations of Hope

Hope is a word, similar to love, that is used quite frequently in our daily conversations and interactions with people. We may hear and/or say things such as, “I hope you have a great day,” or “I hope you feel better soon,” or “I am hopeful that things will get better from here.” Based on these colloquialisms, amongst others, one could deduce that Hope is an expectation in the belief of what is good, great, and better than our current circumstances will occur. 

While some may say that Hope and Faith are the same thing, I would argue that both remain separate entities; although, there are many similarities and overlap between the two. However, I believe Hope is something that must be grounded in something else, whether it be Faith, Love, Family, Community or whatever else that may keep you grounded. But have you ever taken time to think about the full implications of the word Hope?  

In his book, New Seeds of Contemplation, Thomas Merton, who was an American Trappist monk, wrote, “To hope is to risk frustration. Therefore, make up your mind to risk frustration.” To be honest, I have never really considered what I now like to call the “frustrations of Hope.” We have all heard wonderful stories about Hope and those who seemed to have harnessed its power. For instance, just look at the ALS community. Here you will find an abundance of Hope-filled stories about those who fought their fight against ALS with valor, and those who are still fighting their courageous fight against this cruel and abhorrent disease, to the point that the intangibleness of Hope becomes palpable; contagious even.

However, what we often do not tend to acknowledge, or hear about, are the frustrations and disappointments that also coincide with Hope. As a person living with ALS, I have had, and still do, experience the frustrations of Hope. Such as the time when the clinical trial I was in for two and a half years was suddenly terminated due to lack of efficacy in the drug that was being injected into my spine on a monthly basis. Additionally, there are the frustrating times when I experienced the slow, yet consistent, loss of my mobility and independence. And that leads to a ferocious mental and emotional battle like none I’ve previously experienced; the monotony of days, weeks, and months that idly pass by because I have “lost control” of the life I once had and have today. (Like I ever had control of life to begin with!)

Of course such frustrations are things we don’t want to think about or talk about out of fear of making people sad or fear of what they might think about us, out of fear of not being strong enough, and, perhaps, even out of fear of just simply not being enough ourselves. The world teaches us to live and operate with a dualistic mindset (i.e. mentalities such as good vs. bad, us vs. them, etc.). We must not think this way, but instead, it is imperative to “do the work” within ourselves to be able to hold both the goodness and frustrations of Hope in the same light. And this applies not solely to those of us living with ALS, but to everyone. So, what does this mean? How do we “do the work?”

In my experience, I have learned to sit with the frustrations I have experienced since my diagnosis, and I allow myself to feel the discomfort and disappointments of those frustrations, rather than pushing it away and burying deep within. Once I am done sitting with these difficult feelings and frustrations, which may take a few days or a few weeks, I let them go, hold on to what I learned, and then move forward once again in Hope. It is arduous work, and sometimes I fight it tooth and nail, but it is definitely worth the hard work when you come through the other side.

Furthermore, I firmly believe that it’s not the “easy times” or the “mountain peak experiences” that define who we are as human beings, but rather, what truly defines us is how we respond to the challenges of life and the frustrations of Hope. We can allow such tiresome circumstances to sink us or we can allow ourselves to grieve, learn, and heal from our fears, frustrations, and disappointments. 

So, what’ll it be for you? Are you willing and ready to risk the frustrations of Hope in order to experience the goodness and palpableness of Hope? I sure hope so, because Hope is worth the risk. And such risks are what it means to truly live and experience all that Life has to offer.