The grief caused by FTD is persistent, lasting well beyond the end of the FTD journey for family and friends. However, as author and support group volunteer Scott Rose shares in the following essay, writing can be a powerful tool for healing regardless of whether you want to get published or not.

No other accomplishment means more to me than the time that I spent trying to be a good husband to my wife Maureen. Four-plus years after her passing, I still work to keep her memory alive. This includes writing and sharing our book. The question, “How do you write a book?” often comes up.

More questions pour in: “How do I get started,” “What do I include or exclude,” “Who should be my audience,” and “Is it important to get published.”  Most often asked of me, “Was it healing? Will it help ME heal?”

That last question pulls at my heartstrings. I typically ask back, “What do you want to heal from?”  That opens the floodgates, and we have a good cry together.

We do not heal from grief. Grief stays with us. However, if your grief comes with feelings of inadequacy, guilt, anger, or debilitating sorrow, then do seek healing from these. Will writing a book heal all those emotions? Yes, it will start that healing, but it is not just the book, but rather the whole experience that changes you.

Write before you write the book. I will preach with my last breath, “Journal your moments.”  Jot those little notes in the margins of books or scraps of paper that you drop into a drawer for later. Keep your loved one’s voice alive. During Maureen’s FTD, about six weeks before she passed, she graced me with three words, “We are us.”  They struck me hard. Wiped out that night, I still quickly scrawled them on a piece of paper that now has formed the basis of an outreach website and much more in my life.

Get your head right. You can write while still sad. You can write in short bursts balanced with life’s demands. However, you must commit. Adopt writing as one of those “bad habits” that you simply cannot break. Know that you can write everywhere and on anything. A borrowed pen and one napkin became another nine in a small coffee shop when I had to scrawl out a long-ago conversation with Maureen – like her voice was reciting it one last time.

Write with passion and frenzy. Novelist Anne Lamott encourages a first draft as the “down draft,” where one should just get as much as possible down on paper. Think quantity, not quality. If you are like me, that will be difficult, but nobody reads this draft except you. Press yourself to do this in a compressed period (three months max). Corral all those voices, memories, and feelings and get them on paper (or screen). Sorting comes later.

Edit by writing more. Only after you have exhausted your memory of all the chatty moments at the tip of your mind, re-read what you wrote. That act alone will accomplish two goals:  highlight the moments you forgot and identify verbal bridges between your thoughts. Either way, you will write more. Lamott refers to this as the “up draft” – where you start fixing it up.

Maybe stop here. Your path up to this point is often enough to find that healing or closure. John Pavlovitz said about losing someone important in your life, “You lose the part of you that only they knew. You lose some of your story.”  By writing out those conversations and experiences, you preserve those moments together. That alone may be enough. Do not underestimate the value of just sharing those personal times with those that matter most. My grandmother wrote her life down quite simply, with no intention of a formal book. The family treasures it and re-reads it often.

Research your audiences. If you want to take that extra step and put your book out to a larger audience, then figure out who they are. Ask yourself, “Why am I writing this?” or “Who am I writing this for?”  Research who would benefit from your book. Walk the bookstores (they still have those). Do you want them to place it in self-help, non-fiction, medical, or somewhere else? These questions may help guide your own editing.

Seek help. We speak about this in FTD care, “find your support network.”  Book finalization needs that support. You need structural editors (does it flow), grammatical editors (no matter how good you are), cover designers, and to purchase your ISBN (each version needs one: hardback, paperback, digital, audio, etc.). A good editor will have contacts for the formatting so you can upload it to a print shop.

Be bold. Reach out to as many publishers as you can. Understand that nobody loves your “child” as much as you do. Some will be brutally harsh, and many NEVER respond (says so right on their website). Try not to let that dissuade you. Identify those that specialize in your book type or first-time authors. They will tell you on their website whether they are taking manuscripts and, if so, what kind and the submittal criteria. Do not send your whole baby – nothing will get it tossed faster. Often, they want the first twenty-five pages or three chapters and will want to know where you are in the process. I found it best to run it through the editor first. The point is, get yours and your loved one’s voices out there. You might touch someone’s soul.

Believe in yourself. I was pressing publishers in late 2020. During COVID, nobody was taking chances on new authors. Bookshops would only carry what they knew would sell quickly. Every door that I tried shut in my face, with many not even opening my submission. Obstacles became opportunities, and I changed course. I self-published with Amazon. I went from that decision to listing in three months.

Leave judgment at the door. Most of us see our worst critic in the mirror each morning. As with the caregiving journey, you did your best. Accept and love yourself. With most reviews positive, you will still receive a few negative ones. They do not know your journey. They did not walk in your shoes. Ignore them. Do not let them steal your joy.

Celebrate. 80% of Americans think they want to write a book. Only about 15% start writing one. Only about 6% get it half-written. About 1% end up finishing a book, and only one-tenth of 1% get it published. Just start writing. That alone puts you in the 15%. No matter how far you get, celebrate those voices you captured.

Will you experience healing in the words you share or your journey collecting them? Yes, the healing will start. I wrote We Danced, Our Story of Love and Dementia to honor Maureen – as a steward of her memory. A month after she passed, I wrote a note still posted in my home, “Maureen deserves a legacy that lives well beyond me.”  That healing journey never stops.

I wish you a journey that gives you joy. Embrace your book – your love letter.

Scott Rose’s book chronicling his journey with Maureen is available in hardcover, paperback, and digitally through Kindle.