Birthday’s get less and less fun as you get older, don’t they? 

Today, my birthday, I turn *cough* thirty *cough* something and I am starting to understand why. 

At least, I am understanding why as a person with chronic illnesses.

My husband and I like to joke about who is going to die first. (Well, I like to make the joke because he’s 5 years older than me, and men always die before women, right?) I always make that joke and say that, when I die, he has to turn me into a diamond and wear me all the time to never forget me.

But when I do crack that joke, he always makes the same face that shows he’s pretending to be amused by my humor, but it also displays the face of underlying worry. I never knew why until this summer.

After what happened over the last few months, I realized that I may not have as many years left to go as I had always, naively, expected. 

This summer started off on an immediately unstable foot after my grandmother, 2 weeks after celebrating her 96th birthday, passed away in the early Spring. It was of old age and it was not as much of a surprise as it was an expected and sad milestone. She lived a wonderful life, left an indelible memory on everyone she ever met, and helped shape who I am today.

A death in the family is always followed by 7 days of craziness: mourning, paired with droves of people giving condolences, too much food, and a lot more family time than normal. Nothing new, really. But there was a notable ongoing absence – my grandmother’s eldest son – my uncle, Dav1d. 

Luckily, our family was able to spring him from “jail,” (as he would jokingly refer to it in his better days), but only for short stints in a wheelchair that he couldn’t get up from. Even though he was physically with the family while we said goodbye to my grandmother, it was obvious that he was not emotionally or mentally there. He sat in his wheelchair in the corner of my grandmother’s condo filled with mourners, nodding his head to all those who gave their condolences. 

This was the first time I had ever seen my uncle like this. Growing up, he was the only other person in my family who had Crohn’s Disease, and someone I connected with on that unique shared experience. In all the years I had been alive, I never once remember him complaining or saying a negative word about the disease, no matter how much havoc it brought on his body, even when he was on NPO (no food!) from a hospital bed. I credit my own positivity with my disease from seeing how he approached it himself. 

And I know he credited my ostomy positivity in finally giving him the courage to have the surgery himself, about 10 years after me (a surgery he put off for far too many years out of fear.)

Weeks went by after my grandmother’s death, and my uncle, only 66 years old, kept getting worse. There were no GI symptoms, but his bones were getting more frail, his pain was increasing, and his mental health was declining rapidly. My other uncle noted – during a family dinner that Dav1d did not attend – that there was a problem: Dav1d, who lived and breathed aeronautics and space exploration, had no interest in watching the 2024 eclipse. 

A few weeks after that, we heard the news. In doing a test to try and solve the ongoing issues Dav1d was having, they found liver cancer. It was terminal. It turns out that not only can 40 years of steroids ruin your bones, but it can also cause cancer. A risk that he apparently knew about, but chose to ignore in order to keep his Crohn’s Disease symptoms away. 

Having a chronic illness means weighing the risks, and choosing one bad outcome over another at some point in your life.

At the beginning of June, Dav1d  passed away surrounded by his brother and sister-in-laws, and his nieces and nephews. And of course, then began another round of 7 days of mourning. But his death hit me in a different way.

This was the first time I had truly seen an untimely death related to Crohn’s Disease so closely related to me.

If my uncle, who I had watched make through so much of his life with the disease without it getting in the way of anything he wanted to do (own his own business, fly his own airplane, date as many women as he wanted…) can suddenly have his life cut short because of auxiliary effects, what is stopping that from happening to me?

I began to fester on this idea, rethinking every medication I was ever on, every symptom I have ever had, and wondering if all these years I’ve lived so far have been lived based on the right medical decisions. 

Then, almost like the Grossman family had a curse that was passed from Dav1d onto me, I started getting sick. It was not directly related to Crohn’s Disease, but, just like my uncle had gone through, it’s always related.

First, (and this was actually during the final days of Dav1d’s life), I ended up having an extreme GI reaction to nutritional yeast (trust me, you don’t want to know what “extreme GI reaction” means). Turns out, nutritional yeast is really bad for your gut! So I’ll be staying away from that. But my stomach hurt for days after.

Then, only a few days later, I woke up in unrelenting abdominal pain, unable to even get up off the bathroom floor. It was not Crohn’s Disease – it felt different. I had my husband call the ambulance and was taken to the ER.

Besides them giving me pain meds to get some relief, the hospital was – let’s say – less than helpful.

I was discharged with a few more pain meds, extreme fatigue from the ordeal, and fear of putting anything in my mouth. 

(We actually think I may have gotten Salmonella from a fruit tray at my uncle’s funeral because a few other family members had some “tummy issues,” just not as bad as me, ‘cause, of course.)

Finally, those stomach issues started to go away and my immediate family and I decided to go up to our cottage to spend some quality time together after the chaos of the last few months. It was me, my husband, my mom, and my brother, his fiance, and my almost 2 year-old nephew. We had a blast.

My husband and mom and I decided to stay up at the cottage for a few more days, and while we were there, I started to get sick again, but with something different. 

Night after night I came down with a fever. Since we were up at the cottage, we didn’t have a thermometer, and it wasn’t as easy to see a doctor, so I let it slide, until the 5th night (!!) and into the morning, after we went home. I woke up with a fever, and had my husband take me back to the same ER we were just at a few weeks ago. 

(Side story – triage was a joke. I was triaged by a nurse who didn’t know what an ostomy was! She kept calling it a “stomie” and asked if it was chronic… what??)

The ER doctor looked at my file from the previous visit, looked at me and decided to listen to my chest. He sent me for an X-ray, and within 10 minutes, he came to tell me I had pneumonia.

Excuse me? Who gets pneumonia in the summer? This girl with no immune system, that’s who.

I was given a dose of antibiotics in the ER, given a script for more, and sent home. 

You’d think that would be the end of it, right?

NOPE. Only a week after I finished my antibiotics, I came down with a sore throat and lost my voice. 

Ok but that was it, right?

Guess again! 

Turns out, the antibiotics didn’t work, and after 2 months of my initial diagnoses, I still had pneumonia, because my body couldn’t properly fight off the infection. It wasn’t until last week (the end of August!) that I finally received a clear X-ray, and the infection is gone. Only took a good 12 weeks?

As you age, your body, naturally, starts to deteriorate – it’s part of life. 

But did I ever think that at age 30-something, that my body would be deteriorating so fast? 

Not until this summer. 

I have been lucky so far. After my ostomy surgery in 2003, I remained relatively healthy. At least, my Crohn’s Disease has remained at bay for the better part of 25 years. 

But because of that luck, I’ve gotten comfortable and complacent. I have forgotten that I am a person with a disability – a person whose body just doesn’t function the same way, or as well, as others. Most days I don’t think about it. Or, at least, I didn’t until this summer.

I will never act like I have a disability because that’s just not in my nature. I want to be strong, I want to do all the things I want to do, and I won’t let things get in my way. But if this saga has taught me anything, it’s that chronic illness is never gone. 

So, as I celebrate another year around the sun, I am also taking this opportunity to remind myself that life is fleeting. I may not go around the sun as many years as I would like, so I need to enjoy it while I can….

Until I become a diamond