"Everyone Needs Hope" was actually written by me in 2015 when I had the opportunity to go on a five-day vacation. As you know, vacations are rare to go on when you are a full-time caregiver to a loved one with a serious mental illness (or neurological brain disorder). For the first time in 15 years, I had asked two close family members to help with my son while I was away.
I was anxious about being away and, yet, I tried to enjoy myself. By the third day of my trip, one of the family members, who was helping my son, sent me an email with the subject line, "Good Read.” When I opened the email, there was a link entitled “Enabling-Enabler-Resources.” I was completely crushed. What a memorable trip for all the wrong reasons.
When I got home, I called my brother-in-law, who is a retired career air force veteran and lives a long distance from us. He’d been stationed in Afghanistan, at one point, during the Afghanistan war. I knew he’d suffered from mental illness, temporarily, and I wanted to share my pain with him. He empathized with me and said, "I have only a glimmer of understanding of what individuals with chronic serious mental illness experience every day. I suggest you try being placed in a dark well for three straight days, 500 feet down, with a hood over your head, to get a sense of what I experienced during my depressive episode. That might give you some understanding of what SMI folks live with on a day-to-day basis. We all, as human beings, need hope. Mental illness causes us to lose hope. We all need a north star, that unconditional love, that thing to hang onto. Martha, don’t ever forget, you are that north star for Derrick.”
My brother-in-law’s words and complete understanding prompted me to write this piece and I’ve carried it quietly with me ever since. I know my family dynamics and that this kind of understanding will take time.
EVERYONE NEEDS HOPE
We all, as human beings, need hope. Mental illness causes us to lose hope. We all need a north star, a compass, a twinkle of belief, unconditional love, a thing to hang onto, a reason to take our medicine.
I have been in the trenches with my son, Derrick, for 15 years now. You have not been by my side, not seen what I have seen, not had to make the decisions I’ve had to make. Not just for a day or two or three but every day. Therefore, you have no right to lecture or criticize me on my decisions or actions because all it does is hurt me. It doesn’t help me and I can’t accept that. I need to stay focused on the positive. I need to replenish my energy. I know all of the love and effort I’ve put forth. That is the truth of the situation and I know that Derrick knows it, too. I know I’ve made progress over the years. It may have only been an inch at a time, but it’s progress. I can’t begin to imagine where my son would be today without me. Therefore, I know we’ve made progress.
Have I done everything perfectly throughout the years? Absolutely not. I’ve done the best I knew how with the information and resources I’ve had available to me at a given time.
Do I have regrets? Sure I do. Mental illness is complicated. I’m doing the very best I can with what Derrick’s illness allows. His decisions are not always the ones I would like for him to make, but I have to try and accept them.
One of Derrick’s doctors once told me, in reference to his mental illness, that I needed to conserve my energy because this is not a short run, but the start of a marathon.
That’s a daunting thought — the start of a marathon of caregiving.
If knowing what I know today, along with the uncertainty of what will come tomorrow, would I still have made the commitment to begin this race? Yes. Derrick didn’t choose his mental illness — he was only 16 years of age with an amazing future ahead of him — just as no one chooses cancer, diabetes, or Alzheimer’s. The race we start when we begin caring for those we love is challenging and hard regardless of the disease, and we never know what we will learn along the way or when we will cross the finish line. I know I wouldn’t be the person I am today if it weren’t for the many moments I’ve shared with my son, and I’m forever grateful to him for that.
Early on in his illness, Derrick would occasionally look at me in a wise and patient kind of way and say, “Maybe someday you’ll understand,” and say no more. Those words have stuck with me and, as the years have passed, I’ve realized so much, received more to appreciate, and have never forgotten that everyone needs hope.