As I’ve gotten older, I realize I’ve become more introspective, analyzing my relationships, emotions, spiritual well being, and mental health. While talking to others with rare diseases I’ve learned it is fairly common for people to fathom deep things, since most of our illnesses cause us to spend a lot of time in bed, whether it be at home or in the hospital. Many think about the relationships that are lost or broken, while others talk about the activities, jobs, or opportunities they let go because of their health.
Another similarity I noticed was how often the words “I’m sorry” are spoken. In moments of pain, frustration, or embarrassment people living with a chronic illness say, “I’m sorry” often. I’ve noticed that I do the same thing when I find myself in uncomfortable situations. Sometimes I cancel plans because I’m too sick to go anywhere, or my kids have to eat cereal for dinner due to intense pain, as it will be impossible for me to stand long enough to make a meal.
At times I feel frustrated with myself for not being able to keep my eyes open, or being grouchy because I’m sleep deprived, and how our family movie night ends with my husband and children watching the movie without me. I feel awful when I’ve planned a lunch date with a friend but there’s nothing on the menu I can safely eat, or there’s a fragrance the server or a patron is wearing that’s making me ill so I have to make a hasty exit out of the restaurant. During an event for my kids I’ve even had to rush to the car and take my rescue medication because of a spontaneous HAE [hereditary angioedema] airway swell.
In looking back at different situations in my life where I’m always apologizing: I say sorry for cancelled plans; I say sorry for being hospitalized; I say sorry for all our outings that have to be at places that are accessible. I say sorry for being nauseous, for the weather being too hot, cold, or rainy as these conditions could trigger an HAE swell. I say sorry for the food restrictions that they cannot eat or bring into the house because of how it could cause me to have an allergic reaction. I say sorry for the perfume, soaps, lotions, candles, and body washes they cannot use for the smells trigger intense asthma attacks. I say sorry for the financial strain that causes my husband to sacrifice a lot to provide for our family. I say sorry for everyone going without, or trying to find places to go with no cost or are extremely cheap. The list could go on and on for all the things I apologize for.
One morning I was sitting in bed trying to figure out what I could accomplish that day. As I began to make a list I started feeling apologetic yet again. I wasn’t feeling well so the plans for the day were going to be changed. I sighed as the tears streamed down my face. It felt like my body was stealing precious moments from my life.
As the tears kept coming I looked for a tissue to wipe my face. What I found was a note from my daughter saying she loved me and thanking me for being the best mom ever. She shared how much she enjoyed the times we would eat cereal late in the night. It touched my heart to know the time the four of us had to share two frozen yogurts and spent the day hanging out in Barnes and Noble was a perfect family day. She shared how she was excited about how we made our own natural perfumes, facial cleansers, and hair products together.
When I worried she would be embarrassed or feel neglected because we could not afford her new clothes, I learned she actually got excited about the potential treasure that awaited her in my or her aunty’s closets. After reading her letter I was weeping tears of relief and joy. All the moments I apologized for were my daughter’s precious and treasured memories.
The way I look at myself has changed greatly, for looking through my daughter’s eyes showed me I need to stop apologizing for situations that’re out of my control. Instead, I need to celebrate and treasure all the times we spend together, not waste time apologizing for having a rare disease.