He Only Takes the Best: A Diary of Terminal Illness

September 30, 1988
…we had a weird conversation at dinner tonight - Mom, Dad, and Gerald all think that Mom's speech is changing, like it's slurred or something. Mom said that our neighbors even said something to her about it. I don't notice anything - I don't get what all the worry's about…

May 10, 1989
…Mom and Dad went to another doctor today. They finally came up with a diagnosis for her - they call it amyotrophic lateral sclerosis, or Lou Gehrig's disease. They said things are just going to get worse, and there's no cure…

May 10, 1991
…today was Mom's last official day at work - this ALS forced her to retire early. She was having a lot of trouble walking around the office, especially in places where there was nothing to hold on to. And she couldn't answer the phone anymore because the person on the other end couldn't understand what she was saying. Even driving to and from work was getting dangerous - her legs are getting so weak that she has to drive with both feet…

July 15, 1991
…today was a scary day. Mom, Dad, and I went on a day trip, and we stopped at a highway rest stop for lunch. While we were eating, Mom got up and walked away from the table - I figured she was going to use the ladies' room or something. A couple minutes later, I saw her standing near the back of the restaurant, banging on a table to get our attention - she was choking on a piece of food and she couldn't breathe. Dad ran back to help her - some strangers went back to help too - and I ran to find an employee to help us. I was screaming at someone that my mom was choking, and she just kind of looked at me like I was crazy. By the time I got back to Mom and Dad, the piece of food was out and Mom was okay. But it was so scary - that was probably the last little family vacation we'll be taking…

September 5, 1991
…today was my first day of ninth grade. I never thought I'd say this, but I was kind of happy to start school again. This was a rough summer - Dad and Gerald were at work everyday, so I was always afraid to leave Mom home by herself for too long. She has so much trouble swallowing food now - what if I went out, and she choked on something while I was gone? Or what if she fell and couldn't get back up? So I stayed home for a lot of the summer to make sure she was okay. When I did go somewhere, it was always after she finished eating and after she was comfortable in her armchair by the T.V. Then I would come back a couple hours later, and she'd be in the exact same position - I think she was scared to walk around by herself too, and that walker she started using doesn't help her balance much. Now that no one's around during the day, Dad hired some nurses to come to our house while we're gone - now we don't have to worry as much. But I still try to be around as much as possible - I'm one of the only ones who can still understand her speech. Almost everyone else needs her to write down what she's trying to say, and sometimes that doesn't even help - her hands are getting really weak, so her handwriting is becoming very hard to read…

January 20, 1992
…Dad talked to me about Mom's illness today. He wanted to make sure I know that her condition is terminal, meaning that there's no cure, and that she could die at any point in the near future…

March 1, 1992
…Mom was rushed to the hospital last week for pneumonia. She was in the ICU for a few days - that was horrible. They wouldn't let us stay with her, and they don't know how to take care of her the way we do, so she was terrified when we had to leave. Dad and Gerald took turns sleeping in the waiting room overnight. Now she has her own room, and Dad and Gerald take turns sleeping in the recliner next to her every night. I visit after school when I can get a ride to the hospital…

March 25, 1992
…Mom came home today, but the hospital stay made her condition much worse - she's bedridden now, with a ventilator and a trach tube to help her breathe. She can't talk, and the only parts of her body she can still move are her right fingers and her eyes. Amazingly, she uses her eyes to communicate - she spells out words by looking at individual letters printed on a large board, and she blinks when we choose the letter she's looking at. At night, Dad picks Mom up out of bed and sits her up in a recliner, propped up with pillows and towels. Caring for her has become overwhelming, with all her medications and special treatments, so the nurses have started working overnight shifts…

March 25, 1993
…it's been a year since Mom came home from the hospital, and her condition has been relatively stable since then. She has good days and bad days - on good days, very little effort is needed to make her comfortable, and she's all smiles. But on bad days, it seems like nothing we do will ease her discomfort. Those days are especially frustrating for Dad, Gerald, and myself, and although it's not Mom's fault, it's really difficult to hide our frustrations from her. Inevitably, she blames herself for the way we feel and she'll start to cry, which upsets us even more - it's a vicious circle. Thankfully, her mind has remained untouched by this disease - she's still the same person, now trapped inside a withering body…

December 25, 1993
…right now it's 5a.m., and I'm sitting with Mom while she sleeps. It's nearly impossible to find nurses willing to work on holidays, so I volunteered to sit up with Mom while Dad and Gerald get some sleep. There are a ton of gifts under the tree, and Mom actually purchased a lot of them herself! Some weekends, Dad sat Mom up in her wheelchair, and the AbleRide van picked them up to take them to the mall. Whatever Mom didn't find in the stores, she found in catalogs - her nurses held open the catalogs and flipped through them page by page, as Mom picked out the items she wanted to order…

June 25, 1995
…it's hard to believe that high school is finally over! Mom was able to come to the graduation ceremony today. My principal and some of my teachers were really happy to see her there - they met her a few times during this school year when she came to watch my basketball games…

August 19, 1995
…Mom and Dad threw a surprise going-away party for me today - only a week left until I leave for college! Being away from home is definitely going to be hard, especially since I won't be around to help take care of Mom. But I know I shouldn't be nervous - Mom's condition is still stable, and the University of Delaware is only three hours away from New York…

October 1, 1997
…Mom and Dad came to visit me at school today - on their way down to Florida! Ever since Dad bought that special van to transport Mom around himself, they haven't stayed in one place for too long - their conversations every Friday are about where they're going that weekend. Shopping trips, visits to parks, to beaches, to healing masses, even to Belmont Racetrack! Then they got more ambitious - driving 3 hours down to Delaware to pick me up from school last semester - and now 20 hours to visit Gerald in Florida! Mom was smiling from ear to ear, absolutely glowing in her wheelchair, knowing that she'll be spending a full week with her son, daughter-in-law, and baby grandson…

June 1, 1998
…acceptance of AMCAS applications starts today. I have to finish up my personal statement - it's all about Mom - quite fitting, since she's the reason why I decided to become a doctor…

February 4, 1999
…usual Thursday night phone call to Mom and Dad tonight, except the nurse on duty said Mom wasn't feeling too great…hmmm…it's times like this when I especially wish I was home…but she always bounces back from these little things - I'm sure she'll feel better tomorrow…

February 10, 1999
…actually writing from home now - Dad called this afternoon and told me I should come home to see Mom. Gerald flew in from Florida too. Her doctors say it's probably pneumonia. Her eyes usually light up when any of us enter the room - tonight she can barely open them. And her face is usually so animated and full of expression during conversations - tonight there was none of that. This morning I received a letter inviting me to interview at the University of Maryland - I told Mom all about the good news, but she did not respond…

February 15, 1999
mom passed away this morning

February 21, 1999
…got back from Florida this afternoon - we decided to bury Mom there, since Dad will be moving there later this year. The funeral was simple, and the cemetery is beautiful - Mom is buried near a statue of the Virgin Mary. The wake was held in New York - there were four sessions, and each one was absolutely packed with family and friends. People who last saw me when I was a baby, who had no idea how sick Mom really was, came to pay their respects. Thirteen of my friends drove up from Delaware, and almost all of my closest friends from high school came, many of them to more than one session. It frustrates me that I will never be able to express to them how thankful I am for their support. Those who couldn't come expressed their condolences through gorgeous floral arrangements, in all of Mom's favorite colors. I constructed a collage of pictures for the wake, mostly pictures of our family, some dating back several years. Mom would've been proud - those pictures showed just how much she experienced in life, how much she accomplished, how she fought that disease and refused to give up…

January 4, 2001
…it's been almost two years since Mom passed away - I think about her everyday, and I miss her terribly. I am just now feeling some sense of closure - six months ago I organized a student group called Project HOPE (Helping Others through Palliative Efforts) that reaches out to individuals with critical and terminal illness. Looking back, I am thankful I was there a few days before she died, to say goodbye, to kiss her one last time. There is no doubt in my mind that she died on her own terms - once she lost control of her eyes, her only remaining method of expression and communication, she chose to let go. While I would never wish my experience with terminal illness on anyone, I am grateful for the empathy I acquired by taking care of Mom. Her memory drives me to be a doctor - and every time I take care of a patient, I will do so with her smile engraved in my mind, and her strength and compassion filling my heart…