Five years into my diagnosis I was on the third treatment I had prayed would work. It was October of last year when I was on stage in front of hundreds and I noticed the faint smell of Scotch Tape that I thought was coming from my stage microphone. Over the next few days, the faint smell grew into a pungent aroma, seeping into my taste buds. With olfactory senses hit, seizures returning and debilitating fatigue nearing paralysis, I knew something wasn’t right and my immediate thought was every warrior’s worst fear, PML.
PML is a fatal brain infection caused by certain medications, and although very rare in chemotherapy patients, I have always been an outlier. From having a child against 99.95% odds to the rare side affects only 1% experience, I’ve never relied on scientific statistics. So when the fear struck that my condition could worsen overnight without a chance of waking, I got straight to my final messages.
Surrounded by pillows after the sun had set and my family was tucked in, I cracked open my laptop in bed with tears pooling in my eyes and I began typing my story and farewell… messages to my son on his graduation and wedding days, followed by notes of gratitude to my closest colleagues and family members, woven together with hope for the future of chronic illness patients and our country’s healthcare options…
The word “backspace” on my delete button was wearing off, as my numb fingertips continued typing the wrong letters. I had poured four hours into the note, approaching 2:00 am, when I had tied the message up with loads love and thanks, saving to the desktop with a catchy title so it was easy to recognize and access.
When I woke the next morning, I was pleasantly surprised and excited to experience a new day, holding my son much closer and kissing my husband much longer. Days had come and gone and I had begun to recover slowly, almost forgetting about that old letter on my desktop until the concerns of COVID-19 winning the war against high risk communities came to our consciousness.
In my conversations at support groups in communities regarding the pandemic and health concerns, it came to my surprise how little we plan for our family at the end. Family should be able to grieve without worry about making the right decision to honor their loved ones which is why I wanted to do my due diligence as an advocate for the differently-abled community in the difficult to digest conversations, such as building your own last will and testament and final delegations. Here are five lessons I learned that I hope help you build your own path to rest.
Five Lessons Learned From Writing My Own Obituary
1) Take Control of Your Last Wishes
The only thing that is certain in life, whether we want to think about it or not, is death. Death is inevitable and most of us will be fortunate enough to enjoy our great-grandchildren playing nearby as we enjoy our final days. But some, however, will face uncontrollable health battles. And while we will never be able to predict our final moments, we can make sure our body and prized possessions are cherished according to our wishes with a last will and testament and final delegations. Choose someone you trust as your power of attorney and sit down with them to explain clearly and equivocally your final arrangements.
Are you or your loved ones battling illness? If you anticipate emotions to creep in during these plans and conversations, I highly suggest hiring a third party to streamline the process and keep things professional with hopes high and emotions tabled. Estate lawyers are an excellent resource to make sure all thoughts are finalized and polished with legal representation.
Make things fun by sprinkling in some random last wishes that bring smiles during a time of sorrow. For example, I included my wishes to include my dogs, peanut butter cups, Moscow Mules, pink M&M’s and a few of my favorite heavy metal songs (screw that sappy mumbo-jumbo).
2) Cherish Relationships
The biggest gift of all are the people that we have the opportunity of surrounding ourselves with. So my second lesson here in writing my final delegations, was recognizing how blessed I am. Having more than a handful of people to call out is a sure sign of life enriched in love. But the next best thing to thanking them after your passing, is telling them in person how much they mean to you. So here’s my homework for you…
- Make a list of 100 contacts that have touched you in some way.
- Send a special note, gift basket, or emailed gift card to the top 10 as a just because sentiment. Track the shipment and call them upon delivery to check in. Take the time away from your busy day to demonstrate gratitude as actions mean so much more than words.
- Over the next nine weeks, pick up the phone and call 10 of your 90 remaining connections each week to check in and catch up, sharing your favorite memory with each one of them. To push the connection even further, dig up a photograph to send along with your message!
On the reverse side of cherishing relationships, it’s also important that you set clear, healthy boundaries to eliminate toxic people from your life. Don’t waste your valuable time or health on energy vampires that suck every ounce they can get out of you before turning cold and volatile. Life is too short to be taken advantage of. Make the change and take control of your happiness.
3) The Magic is in the Details
In writing my story, I realized how significant the slivers of hope were versus the massive feats and noteworthy accomplishments. Life isn’t like your LinkedIn profile. At your funeral, people won’t be boasting about the fact that you crossed the 7-digit salary mark or that you were on the cover of a magazine.
The stories I shared were those of heavy sentimental value, including my country oak table and chairs–the first piece of furniture I was able to purchase on my own following a half decade of severe financial struggle. We had been gathering for each meal over an antique table that had seen a million meals and made its travels from Germany in the 1800’s all the way to North Dakota, and over again to Wisconsin. Traveling down generations, meal after meal, and into our home until the usage of the years and families had worn it to shambles and it collapsed mid-meal with a rambunctious three-year-old. That table shared all our memories for four generations and I had thought of who I would want at my table for one last meal… who’s memories was I a part of, too? Those are the stories your colleagues and loved ones want to hear. They want those dinner discussions.
When I was visiting Google’s Chicago headquarters for a PPC/SEM training, I experienced this moving advertisement from Google, representing micro-moments. Micro-moments are those little moments that sneak right passed us when we aren’t paying attention. They lead us to our big moments and key life celebrations… like the night you decided to put your studies aside and go out with your girlfriends for dancing, Moscow Mules and fun where you accidentally bumped into a man that would be your future husband. Soak up those micro-moments. In the end, it’s those moments that matter most. Here’s the video for reference.
4) Get Vulnerable
Strength is inspiring and motivating alike, but we can’t get strong without the adversity that pushes us forward. Within your last delegations don’t be afraid to let your guard down – after all, this will be dealt with after you are gone, so what is there to worry about? People may forget what you did and the things you accomplished, but they will never forget how you made them feel. To ignite emotion, dig deep, share openly and shamelessly. Leave a lasting legacy with your final story and your final words.
If you have looming conditions and want to take serious precautions, think about the option of documenting your story with a professional or starting a vlog where you can share your stories, personally. One of my community members within our support group suggested recording videos for milestones to display for their children at milestones, such as their prom, graduation, or wedding day. You could even begin a personal vlog for yourself to keep track of your healing process!
If you’re looking for an experienced copy writer or ghost writer, I have many recommendations and you can find quality representatives on LinkedIn, like Amy Blaschka.
5) Don’t Sweat the Small Stuff
The laundry hasn’t been folded, the dishes are filling up the sink, and you’ve got that project you’ve been meaning to finish. Well guess what? Putting it off another moment isn’t the end of the world, so stop sweating the small stuff. Life is too precious and flies by far too fast to worry about the things you can’t control. The magic may be in the details, but the details aren’t worth concern.
Control your stress with mindfulness, meditation and gratitude while dedicating specific hours each day for those tedious tasks to amplify productivity. Set aside time each day, like 30-minutes before bed, to tackle those pesky projects on super speed to accomplish double the work in half the time!
If your mind races like mine before bed with a list of all the things you “have to do” first reframe your thought to a positive mindset (check out my article on neuroplasticity, Three Ways to Rewire Your Mind). Change the word HAVE to GET, i.e. “I GET to do the the laundry…” Then, try a relaxing bedtime body scan meditation to let go of each pressing concern and ease into deep relaxation. Check out this YouTube video for an example.
I hope that by sharing my experience with chronic illness and final preparations bring warmth and security to your heart, despite the global COVID-19 pandemic that faces our loved ones. Life and death are a part of everyone and I encourage everyone to build their own last will and testament and final delegations, regardless of age or health status. Until next time, let me sign off the way I had in my draft…
May your heart always be filled with gratitude and may you never forget that magic exists.
Yours in wonder,