In 2009, I fell ill with some serious gastrointestinal problems. I required several surgeries, which created a number of complications and disabilities. I struggled to remain at home with feeding tubes, central lines, and other health challenges. I was spending up to 10 months a year in the hospital.
By 2016, during Hanukkah, I decided to stop medical treatment and let nature take its course. I was 34 years old. If I withdrew treatment, it would be a matter of weeks or months before I would die of dehydration and malnutrition, or from an infection. But I was so tired of fighting that it didn’t even phase me — I just wanted the nightmare of in-and-out of hospitals to be over. I also felt like a burden to my family, especially my husband, Brent.
After meeting with the palliative care team and my family, however, we decided that, instead, I would move to a complex continuing care ward at a long-term care facility. Complex continuing care is like being on a medical unit of a hospital but in a more home-like setting.
I wasn’t too keen on going to such a facility. However, I knew my family, my husband, and my in-laws were not ready to say goodbye yet. I felt incredibly guilty and selfish for wanting my life to be over. I also thought that maybe I was giving up too easily, so I decided to give it a shot, with the caveat that if I did not like it, I could go home and withdraw treatment again.
I may have had my doubts but I am so grateful that I was provided the opportunity to keep living. The move has been transformative: I have better quality of life, and better symptom control. I have a private room that is very homey, with lots of personal items that are meaningful to me. The staff treat me like I am a family member. They can handle most medical issues that crop up, so I’ve had fewer hospitalizations.
What’s more, I no longer feel like a burden to my family and husband — now, we can just enjoy our time together. I have a rich life and a wide circle of friends and family who are always visiting, calling, texting, messaging, Facebooking and video chatting with me. I am never alone if I don’t want to be. I am still very sick and my medical condition is complicated, but I feel like a person again, not a walking constellation of symptoms.
It is my two-year anniversary of being accepted to the complex continuing care program. It made me really think about how much I have learned these past two years:
1. Life doesn’t always go according to our plans. Man plans; God laughs. You can’t change the past, and you cannot control the future, so live for today.
2. We get out of the universe what we put into the universe, so if you aren’t happy with the way life is going, change your attitude and actions.
3. Stuff is just stuff. The pursuit of stuff may bring fleeting moments of happiness, but it wears off quickly. Be happy and grateful for what you have and don’t measure your life’s worth by the salary you make, or the square footage of your house, or the kind of car you drive. In fact, learn to live with less. You will be amazed at how freeing it is.
4. The true joy is in giving and not receiving. If you want to bring me something when you visit, donate some Kleenex or toiletries for the residents on the unit who don’t have people to bring them stuff.
5. It takes less effort and energy to be kind than it does to be an asshole. If you put love and kindness out there into the universe, you will be rewarded with love and kindness in return. Say hello to strangers. Pay people compliments. Help those who are less fortunate than you. Advocate for those who don’t have a voice.
6. Tell people how much they mean to you while they are still here.
7. It’s OK to have meltdowns and to cry and to feel sad sometimes. Give yourself the space you need to process those feelings. No one is happy all the time. If you find yourself unhappy more than you are happy, tell someone and ask for help.
8. Everyone has burdens to bear. Every single one of us. Some have bigger burdens than others, but we all accumulate baggage on the road of life.
9. You can never have too much family or friends. Collect people, not things.
10. Time is the greatest gift you can give people. Visit sick friends and relatives. Mentor someone. Go on a trip with your family. People will remember the time you spent with them. Even though I live at a long-term care facility, I am always having people over for meals or coffee. I have even thrown a few parties!
11. Marriages come in all shapes and sizes and just because you cannot live with your spouse doesn’t mean you can’t still have a good marriage. Most 30-somethings don’t have to cope with having a spouse living in a care facility. Do I miss living together? Of course! Do I value our time together more now? I do. Has distance made us closer? Hell yeah! Do I love Brent more now than I did before? Definitely!
12. Be gracious. There is so much to be thankful for. It is easy to fixate on what is going wrong in our lives and to forget about all the good stuff.
13. Health is fleeting, so enjoy life while you are healthy enough to do the things you want to do. I regret the years when I spent most of my time working and not doing things I can’t do now, like traveling. Things can change in a moment, so don’t put off doing things you want to do.
14. When you are feeling the urge to retreat, that is probably the time you need to reach out for help most. Don’t be afraid to ask for help. Everyone needs help sometimes.
15. Family is not always just the people we share genes with.
16. The hardest choices can have the biggest payoffs. Embrace change! I really didn’t want to come to Riverview, but my quality of life is so much better now. I didn’t know that when I made my decision to come here. Sometimes we just have to take a risk.
17. We all have something to contribute to this world. How do you want to be thought of and remembered? Even though I can no longer work or formally volunteer, I still find ways to help the people around me.
18. Getting sick in some ways was a gift — it made me realize what really matters in life. Jobs come and go, money comes and goes. Our relationships with others are what sustains us. Quality of life is more important than quantity of life.
19. We all have an expiration date, and some of us, unfortunately, get less time on earth. I am not going to get to be a little old lady. For a long time that made me really bitter, but then I think about all the experiences I have had, and all the people I have in my life, and I am reminded of how lucky I am to wake up in the morning. Every day is a gift, even the crappy days.
20. Forgive and forget. That grudge you have? Let it go. That falling out you had with a friend? Make amends with them. That person who cut you off in traffic? Just smile and wave. Negativity is like cancer. If we do not address it, it spreads and consumes us.
