On a recent Facebook post someone commented just one question, “What’s the best way to support those suffering?” This is a question that we receive every time we walk out the door, speak or share anything on social media. With as often as I am asked the question you’d think I would be able to come up with a good, succinct answer but I haven’t. I still feel woefully inadequate in my efforts to support Josie and especially inadequate when helping others support those they love. However, I refuse to stop trying to help. That determination has led me on a journey of discovery in the hope of becoming what I hope is an exceptional support and resource for others. On this journey I have learned that everyone's experiences and subsequent needs differ. But I have also learned that there are 5 main things we can do to offer support and a helping hand.
1. Don’t evaluate. Validate.
It seems to be a common human practice to try to discredit anything that doesn’t fit with our personal views or expectations. If we are not careful, this practice can be very damaging to those we are trying to support. For people like me who do not suffer from mental illness, overwhelming grief or chronic pain, it’s hard to understand why others do not feel the same way I do. Then I begin to evaluate and try to discredit their suffering. This is possibly the worst thing someone can do. I’ve learned that my role in supporting Josie is not to be the judge of what she is capable of or determine the rationality of her feelings. My role is to be her husband, not her doctor. Learning to say (and mean) “I know this is hard. I know this is real. Thank you for still being here!” This has been one of the most valuable lessons. The best way we can support those suffering is to validate the struggle and applaud their daily efforts.
2. Listen with love.
Listening with love may seem trite but the difference it can make is astounding. Listening is hard. True listening requires setting aside our preconceived notions and assumptions while giving our undivided attention to the speaker. It’s a skill that can be developed with practice. It can also save someone’s life. Those who struggle with any form of mental illness deal with an abnormal amount of negative emotions that can be more than one person could possibly handle. They need to be able to share that burden and unload it. Encourage open and honest dialogue then listen with the purpose of understanding. Nothing more. Nothing less. I once heard a story of a father who would habitually lose his patience when his son would have an anxiety-driven meltdown. The father would ask damaging and belittling questions like “What is wrong with you?” or “Why can’t you pull yourself together?” But one day after another untimely breakdown the father took a deep breath, stepped back from his assumptions and asked “What is that like?” Their relationship changed forever. The son finally felt safe and validated and the father was able to get a glimpse of the demons that the son wrestled. When trying to support someone who struggles we need to have the attitude of “I understand that I don’t know what it’s like. Help me to understand.”
3. Keep it fresh.
We all have a remarkable ability to adapt to our surroundings and circumstances. What once was the center of our attention gradually fades into the background as time marches on. If we are not careful the cries for help that once pulled on our heartstrings and moved us to act in compassion, can become background noise as monotonous (and annoying) as the cry of a lonely kitten. But we need to understand that their suffering never becomes monotonous or dulled by prolonged exposure. Every day Josie wakes up to her worst nightmare. She once expressed to me that she feels darkness every second of every day. This has been a very hard concept for me to wrap my head around. I finally understood when Josie told me that every day is like 50 First Dates, except instead of not remembering the events of the past day she cannot remember what joy, happiness or comfort feel like. Therefore it is up to me, every day, to remind and help her rediscover joy.
4. Share the load.
We can share the emotional burden of those who struggle by listening with love but in cases of more extreme and long term suffering, listening isn’t enough. Our marriage works because I expect Josie to be in bed all day every day, with the understanding that I will have to do everything else. I've told Josie that her only job in our marriage is to survive. This is important for two reasons: A. Anything that Josie does beyond simply surviving is a welcomed and celebrated surprise. B. It takes an enormous load off of Josie’s mind. Removing the pressure of expectations allows her (at times) to do more than she would have with the oppressive weight on her mind.
5. Build a village.
As I mentioned, those who suffer with the darkness experience an abnormal amount of negative emotions. At times we experience enough negative emotions to saturate two lives so it is important to build a village of support. Josie can’t do it on her own and I can’t support her on my own. There have been many nights that I have crumbled to my knees under the pressure of my many responsibilities. It can be lonely and frustrating knowing that if anything is going to get done I have to do it. However, we have been very blessed to have amazing family support. We are lucky to have friends and family who are kind enough to offer something as small as a listening ear or as large as spending a week at our house to help with a backlog of chores. Building your village begins with asking for help. This can be hard and it requires uncomfortable vulnerability but you will be surprised at how many people will be willing to help. When asking for help please keep in mind the lesson that my mother taught me. “You should never ask someone to do something for you that you can reasonably do for yourself.” With that as a guiding rubric, be open, be vulnerable and allow others to serve you while doing everything you can to be independent and productive.
Finally I would advise you to share gratitude daily. Expressing gratitude is the act of opening our eyes to present joy. By expressing gratitude we shift our focus from the imagination of the joy that COULD be to the joy that IS in the moment. Helen Keller lived in darkness because her eyes and ears were damaged during a childhood illness. She could not see or communicate with the world she lived in until Ann Sullivan was able to break down the barriers of ignorance and illuminate a world that had been beyond Helen’s grasp of comprehension. That moment of illumination came when Ann patiently signed the letters W.A.T.E.R. as the cool liquid flowed over Helen’s hand from a pump. Then it clicked and Helen drug Ann around tirelessly identifying objects until Helen could “see” the world through Ann’s hands. Because Josie’s broken brain does not allow her to feel joy, it is my pleasure to take her by the hand and spell out J.O.Y. repeatedly until finally Josie can see beyond the limitations of her darkness and experience the light of the joy that she cannot feel.