Category Archives: family

LilliRose’s Story: Living with Hidradenitis Supporativa

I arrived early at the Schaumburg Starbucks. I didn’t want to be late.  I had corresponded with LilliRose for several weeks and had sent her my photo a few days earlier.  I told her that I would be wearing a red ball cap for identification. I didn’t know what to expect, as she was my first interview

After a short time, I heard my name being called from behind me.  “Mike Kuna?” I turned to see a beautiful 24-year-old with a bright smile.  It was LilliRose, here is her story.

LilliRose grew up in Schaumburg, the oldest of two children.  Early in her life she started to take dance and had a natural talent for it.  She is creative and excelled not only at dance but also at acting. Although dedicated and intelligent, LilliRose had difficulties in school with reading and math.  It was later determined that she had both dyslexia and dysgraphia. Her mother stepped in, helped her, and eventually, her reading ability improved. However, math continues to be a struggle for her.

LilliRose was active in school theatrics and was also involved with a musical theater production company during elementary and high school.  Her acting skills caught the attention of a manager who told her, “You can act,” and for several years she tried out for a variety of parts that ranged from local TV commercials to LA productions.  In school, she was active in Poms and maintained a “B” average despite her learning issues. On the surface, it would appear that she was leading a charmed life.

When LilliRose was ten, she discovered a lump on her inner thigh close to her groin.  She is a private person and kept the bump to herself. Months later that her mother discovered it when she saw LilliRose in a bathing suit.  Concerned, her mom took her to a dermatologist who told her that he didn’t know what the bump was. Other doctors and other treatments followed.  The bump sometimes got bigger, sometimes smaller. None of the treatments helped.

It took about a year before a new doctor finally came up with the correct diagnosis, Hidradenitis Suppurativa (HS) a rare skin condition where the patient develops painful cysts, papules, and nodules in the groin, breasts, and armpits.  Cysts can ooze malodorous pus. The disease is chronic, its cause unknown, treatment is limited, and there is no cure.

LilliRose tried to ignore her illness and to live her life as a typical teen.  She went to school, dated, and was active in extracurricular activity. “I didn’t think about HS very much.”  She held onto the false idea that one doctor told her, “You will outgrow this illness.”

She entered Columbia College as a dance major.  However, after a year of schooling, she realized that she did not have the all-consuming passion necessary for a dance career.  She is now on a hiatus from school and supports herself as a server.

Two years ago the bottom dropped out for LilliRose.  Her lesions spread to her underarms, and this was devastating. “Before they were hidden, now everyone could see them.”  She also became aware that her HS would not fade away with age. It was sobering for her to realize that she could be dealing with HS for the rest of her life.  LillieRose fell into a deep depression.

“I ignored my HS before, but two years ago I faced it. I didn’t understand how I could deal with the sores and pain when I was younger and then couldn’t as an adult.”  Things that she did in the past became difficult. She started to give up activities. “The pain can range from intense burning to bruise-like. Sometimes the searing pain will shoot down my leg.  It can make it impossible to dance. Sometimes, I can’t even go to work.” Eventually, LilliRose sought help by attending an outpatient treatment program for anxiety and depression. “It was helpful, but I knew that it was not enough.”

One day she decided to move forward by taking a more active role in her life.  She studied nutrition and discovered that certain foods made her condition worse.  “I love french fries, but if I eat them I know, I’ll have a flare-up the next day.”  She regularly went to the gym. She attended a meditation class. She started to learn things for the sake of learning.  “I have a friend who is a forest ranger. We go walking, and he tells me the most amazing things about the forest.” She changed jobs, she made new friends, she read more.  “I didn’t want to take medication for my depression. I prefer a more natural approach.”

LilliRose feels fortunate that she has very supportive parents and a wonderful and understanding boyfriend. Although she would like to feel even better, she has made progress dealing with her anxiety and depression.

Her HS has impacted her in a variety of ways, but not all of those ways are negative. It has made her acutely aware of other individuals who suffer from physical and emotional illness.  She plans on going back to school next term, this time to study business. Her goal is to eventually open a center where people of all types of disability can gather. A place that will provide dance and art therapy.  A place that will be a home for rescue animals who have nowhere else to go.”I have two dogs, and they are always there for me when I’m having a flare-up. Animals can be healing” The center will provide a welcoming place anyone who suffers from a disability.  A place where they are accepted, understood, and helped.

Thank you LilliRose for talking to me.  

If you have a story that you would like to tell, please contact me at SPAMmike_kuna@hotmail.com (remove the word SPAM in the email address).

To learn more about this project click here.

LilliRose

 

NNHS Graduation/The Ugly White American

It was a little before 6 PM, and I received an urgent call from my wife, Julie.  “You got to get here now!” She said. She had driven my daughter to Naperville North High School for her 7 PM commencement ceremony.  “The place is already packed!” Julie exclaimed through my earpiece.

I told her parents that we needed to finish dinner and get moving.  Soon we were in my car driving the 6 minutes to the school. As we arrived, I could already see the parking lot filling.  Luckily, my wife had obtained handicapped parking, as her parents are both near 90.

Her parents were guided to handicap seating, and we made our way to the bleachers.  As usual, guests had secured extra spaces for their friends and relatives by holding spots with coats and blankets.  With that said, there were still swatches of seating, and we quickly found a place for the three of us. We settled in, and I started to fiddle with my camera.

About three rows in front of us was a family of Indian origin.  It looked like a dad, mom, a kid and some relatives. It appeared that they had a good family representation, but they also had blanketed an area in front of them for additional guests.

Around 10 minutes before the ceremony I saw a large white man out of the corner of my eye.  He was wearing the suburban white guy uniform, khaki pants, and a blue shirt. With him was a teenage girl sporting an expensive haircut, and presumably, the guy’s wife who looked like a suburban white mom.  He started to push his way into the bleachers as he headed for the seats reserved by the Indian family. I could hear the small Indian man telling him that he was saving the seats for his family. The big white guy seemed to sneer as he loudly said, “They are not here now, they lose their seats.”  (or something similar to that). The Indian man protested more, but the big white guy moved forward, followed by his family. Speaking of the white guy’s family, they moved in without any sign that they were disturbed by his behavior. I thought, “Talk about entitled.”

The Indian man gave up, but I could see the humiliation on his face.  My wife turned to my son and told him, Don’t you ever act like that man.”  My son replied, “I never would, or will.”

Five minutes later I spotted a younger Indian man coming up the bleachers.  Behind him was an elderly Indian woman. Her very white hair neatly pulled into a bun, her body bent over from age.  The reserved seats were intended for these people. I imagined the younger man picking up his grandmother for this extraordinary day. I pondered that they likely came a little late to avoid the surging crowds, as the lady looked frail.  I thought of the excitement that they must have felt anticipating the graduation.

There was no seat for them.  The white guy saw them but could care less. They uncomfortably squeezed in with their relatives.  I felt as powerless as the small Indian guy. Do I create a scene? That would do nothing. Should I apologize to the Indian man for the other guy’s horrible, entitled, and self-centered behavior?  That would probably embarrass him even more. I said a little prayer.

At the end of the two-hour ceremony, we exited, and God granted me a favor.  As I was coming down the bleachers, I saw the elderly Indian woman trying to exit.  The crowd was pushing forward and would not yield. I drew myself to my biggest white guy size, and I blocked the path behind me making space not only her but her entire clan to exit.  As the small Indian man left the row, he looked up at me, and in his eyes, I could see his appreciation. I showed him the respect that he deserved. I felt a little bit better.

The big white guy had hooted when his son’s name was called to gather his diploma.  I made a mental note as I wanted to see who he was. I thought he had to be someone in power to treat another human being so terribly.  I found the son on Google. He played football for NNHS and had a few minor newspaper articles, but I could not find the dad. His big guy’s ego was more significant than his position. One of the articles that I saw mentioned that the son was a “good guy.”  I thought to myself, “I hope so.”

Dear reader, please love your neighbor, and “Don’t’ you ever act like that man.”

Graduating almost 700 students.

Watching Galactica

I enjoy spending time with my family, and they enjoy spending time with me. With that said, as of late beyond the dinner meal and vacations it is more common that my connections with them are one-to-one instead of en masse.

This modular way of relating has been increasing as my kids have aged from children to teens. They have their own lives to live, and at any given time one or more of them may be hanging out with their chums. I know that this evolution is reasonable, but I still long for the time when we spent most of our hours together.

On Thursday evenings I cook dinner with my two youngest. We laugh, joke, and review our day with each other. It is a great time that we look forward to. However, “Making Dinner With Dad Thursday,” only includes three of the four remaining in-house Kunas. Thankfully, there is one event where we all participate, that event is watching “Battlestar Galactica.”

Battlestar Galactica is a TV series that ran for four seasons, starting in 2004. The storyline is science fiction and involves a humanoid race fleeing from their robotic enemies as they try to find a mythical earth. This summary may not sound very compelling. However, the storyline is just a canvas to explore other questions. Questions of prejudice, questions of religious intolerance, questions of duty, to name a few.

After she read good reviews about the series, my wife suggested that we watch the show, which is streamable on Amazon Prime. None of us viewed the show when it initially aired, so we thought we would give it a try as a family activity.

Since this is a family watch, strict policies and procedures quickly evolved. It is unclear who developed said policies, but all participants vigorously enforce them.

Here are a few examples:

1. We can only watch an episode when the entire group is present.
2. We try not to read the Amazon Prime plot summaries beforehand.
3. It is encouraged to loudly express feelings about characters and situations while the show is playing. It is not uncommon for one or more of us to loudly gasp or shout a condemnation to an on-screen actor.
4. All lights have to be off when we are watching the show to allow full immersion.
5. If a viewer gets up for a snack, it is acceptable to beg, bully, or shame them into getting refreshments for the rest of the watchers.
5. Wild speculation about a character or the plotline is encouraged. 6. Debate over such speculation is expected and should be as raucous as needed to make a point.

We typically watch one or two episodes at a time, as that is the amount of TV that I can tolerate, and it may be a week or more until we gather again. Because of these restrictions, we have been watching episodes for months, and we still have a few left before the series end.

It is a fun time that draws us together. Many of the shows deal with philosophical questions which serve as fuel for our family discussions and debates.

Like “Cooking With Dad Thursday” it is something that allows us to gather as a family. When we finally finish the Battlestar series, we will find another activity that will “force” us to spend time together.

It is essential for us to remember that we are a family. It is vital for us to remember that we are there for each other. It is crucial for us to remember that we love each other. Activities like this serve these purposes.

Dear reader, I would like to ask you to find your own “Battlestar” activity for your family. Perhaps it will be a family dinner, maybe a board game night, possibly something else. It doesn’t matter, it just needs to be something that is shared with each other and (on some level) allows interaction and communication.

Children become teenagers, teens become young adults, young adults become adults. The time that we have with each other is precious and limited. You will never get to experience today, again. The same can be said of this month and this year. Don’t waste the gift of your family.

My Birthday Party And Other Stuff

Sunday was the day; I was not only excited, but I was also very anxious.

Julie, my wife, had been planning my birthday party for months. Although a competent person, she feels insecure when it comes to planning big events, and so she also had the jitters.

Luckily, the morning started with a fun distraction. My friend Tom came over and we “sailed” the “Mary Ann” 5 miles down the DuPage River. It was the maiden voyage for my $80 estate sale canoe. The adventure was great fun, but it also demanded a second shower for the day as I was soaked in river water.

By mid-morning my daughter Anne and her family arrived. My grandkids, Sebbie and Diana, were the perfect distraction.

Two hours before the event Julie and my two youngest kids left me to set up the party. Julie had secured a room for the event that was big enough to accommodate everyone. However, there was still much work to do.

My introvert anxiety now on the rise, I started to pace. As the party time approached, I asked Anne and her family to go to the event so I could have a little time alone.

Twenty minutes later my daughter Grace was at the door, acting as my chauffeur. I was instructed to lap-carry my sugar-free birthday cake, as Julie was afraid that it would have melted if she had brought it earlier. We entered the parking lot to find Julie standing there. “You can’t walk into the party carrying your birthday cake. There are already people here waiting for your arrival!” I handed her the cake, took a deep breath, and entered the building.

Now inside I could see others coming through the window. I marched up the stairs and into the room where my party was being held. Julie and the kids had signs, balloons, and other symbols of celebration. Trays of food were set on tables; smiles were set on faces.

Friends and family had put themselves out for me. They were there to wish me well. Several hours later my party was over. I felt great but exhausted. However, the best gift was yet to come.

Now home, Julie handed me a scrapbook with a cover made by my son William. I opened it to pages of memories. Weeks earlier she had asked the invitees to write her with memories of me. The first pages contained letters from her and the kids. I was overwhelmed. Then other messages and notes. There seemed to be a general theme, which I will likely write about in a future post. There was so much love in the letters that I was barely able to get through a single one without tearing up. It was the best gift that I could have ever received.

We all live busy lives. It would have been easy for my guests to have sent their regrets. It would have been simple for them to claim to be too rushed to sit down and write a paragraph or two about me. It is a “what about me” world where everyone is more concerned about themselves than others.

There are times when someone has to decide to either give of themself or to withhold of themself. In this situation, people gave their time to come to my party. They gave their creativity to write down their memories of me. Did they do these things because I’m so awesome? No, they did these things because THEY are so awesome.

I once read that integrity is doing the right thing when no one else is looking. They could have done nothing. They could have justified their actions because they were too busy with their own lives. They didn’t say, “What has Mike done for me lately?” They didn’t calculate the cost of their actions vs. the gain that they would receive. They didn’t ruminate over petty slights that I may have caused them in the past. They just did what they did because it was the right thing to do, and they did it with joy and kindness in their hearts. This is what I felt when I attended my 65th birthday party, and this is what I felt when I read my book of memories.

There is no greater gift than to allow the people in your life to love you and to love them in return. Thank you party guests, thank you memory book writers. Your actions say so much more about you than they do about me. With that said, your actions touched me deeply, made me feel closer to you, and allowed me to see how truly wonderful you are.

Wonderful folks
Sugar-free cake!
tearing up with emotion