“Enjoy the Process” sounds simple enough if we’re talking about learning golf or spending a weekend at a meditation retreat. But, where are the enjoyable moments within the process of adjusting to a life changing disability? In 1975, at the young age of three, I was diagnosed as a Type 1 Diabetic. In 2008/9, I lost most of my hearing—now, I’m profoundly deaf. In 2010, I had to start dialysis, a physically and emotionally exhausting process, because my kidneys were failing. 2011 marks the year I started recovery for drug addiction and depression. In 2014, I received an anonymous living donor kidney. Almost exactly a year later, I spent 8 months in a hospital dealing with vascular disease as a result from diabetes and dialysis and that took both my legs below the knee. In 2019, I finally received a pancreas transplant. I’m writing this to share some of my experiences on what I have been able to reflect on when it comes to going straight into the middle of what’s facing me, only to get to the other side. The moments that allow for enjoyment truly exist and sometimes seem so small and insignificant that I would wonder “why” about it all.
I’m sharing my experience, not to perpetuate the notion that “if I can do it, then so can you”, but to communicate my reflections of unanticipated hardships that I had to tackle head-on. Although my life has been filled with significant adversities, I’ve simultaneously encountered moments that enabled me to experience enjoyment. It is those joyful occurrences, no matter how small, that sparked a sense of belonging and fueled my endurance throughout my journey.
People living with disabilities and complex health conditions often lose their ability to “experience life” as a result of both the physical and emotional burden of illness. I wanted independence, growth. I didn’t want to feel needy. Consequently, throughout the hardships I’ve faced, my goal was never to become falsely optimistic; rather, I aimed to get through each day and to do whatever is in my control to make the “good” days outnumber the bad ones. I would like to think I’ve accomplished my aspirations, which would’ve been impossible without tools that helped me enjoy the trying process of recovery. I think it’s important to use tools because they can support someone to get through difficult times. It just takes practice to find out the tools that work best and when they work best.
Based on my lived experience with managing this complicated diagnosis, I’ve developed some coping mechanisms that equipped me to persevere in my daily activities.
1) Listen to your body – I cannot stress this enough. Your body may need to communicate differently to you. Listening to the message your body is trying to relay to you, perhaps as a reflection of internal and external occurrences, is crucial. Doing so, whether it’s through mindfulness meditation or body scans, provides a holistic core environment that optimizes progression through your path of recovery.
2) Commit – Stay committed to your long-term goals by acknowledging your failures and successes. Try to do this daily, don’t just focus on the failures, and reward yourself for your accomplishments. This notion is important because even the smallest gains provide movement towards your goals. You may even find that some of your early successes are aha-moments.
3) Find your Wonder – This is to help bring back and highlight virtues you’ve gained by being aware of your lived experiences, while simultaneously letting go of ruminating thoughts, negative emotions, and stress. Personally, this enables me to break down massive challenges into digestible pieces. A personal example of an early wonder involves getting bandage changes—I would find myself getting excited about learning the process, witnessing my wounds slowly heal, and I found my interactions with the nurses really meaningful.
4) This is all about you working on yourself – that’s it. It a continuous process. There is no finish line. There is no “right” or “wrong” way to do this. It’s all about learning who you are, what you have control of, and what you value to ultimately improve your life.
5) Rest – Remember to take a break, both physically and mentally. This is related to listening to your body, but it can also be a scheduled occurrence. It may be difficult for someone to take a break, especially when striving towards an action-oriented goal, but I encourage you to keep trying to work breaks into your routine until you find something that works for you.
6) Avoid making comparisons – Your progress is just that, yours. Everyone has their own journey requiring unique approaches, yet it’s easy to adopt wishful thinking approaches from others. Finding alignment and authenticity in yourself and trusting the process you’re undergoing can help you reflect, heal, and evolve into your own vision.
7) It’s okay to have mixed feelings – You may experience many of these feelings at times you think are inconvenient. My advice is: let them happen. Try not to minimize, deny, or belittle your own feelings. Try to pause, observe these thoughts, and question them. Try to remember that this is new for you. Try to remember that it’s okay to have these kinds of thoughts. Try to remember that recovery is not linear. In a way, you’ve now become an explorer in a new environment with untested equipment. If that doesn’t bring up all kinds of feelings, then I don’t know what will.
8) Participate in something you enjoy – Whether it’s a new or old passion or activity, try to engage in something that brings you joy. This is really important because I find it therapeutic to do something purposeful and meaningful to me. I feel like we all need the “release” and excitement that enjoyable activities bring. I find making time for small, enjoyable activities on a daily basis brings a powerful momentum to the recovery process. This momentum can fuel your drive to reach your goals.
The life I currently lead is nowhere near what I thought it would look like. Yet, the life I live with my disability is much more fulfilling than I could’ve ever imagined. What helped me most is being present in the moment—to live within it, to focus on the present, to enjoy it to your best ability, and most importantly, to allow yourself to make mistakes and learn from them. There is a lot less pressure when we can allow the room needed to grow. I challenge you to speak your truth, fulfill your daily promises to yourself, and asking yourself “what do I need in this moment?”