It is okay to have a chronic illness but a mental health issue, is that okay?

I’m on a plane from New York/La Guardia to Chicago/O’Hare with People and Us magazines tucked into the seat pocket in front of me. Yes, I purchased them both along with the big bottle of room temperature Smart Water and a pack of Lifesavers from the Hudson News stand right before it was time to board. This is my flight routine, and I admit this is my weakness, trashy magazines when I fly.

I was in New York City working on our upcoming Rock the Night to Cure Crohn’s and Colitis event on December 1st. This will be our 2nd in NY and our 9th one overall. With all that is going on, it’s a bit of a push for us to muster up the energy for the planning and executing of these events, but as I just told someone, it is like a phone call that we keep answering because our families and the larger IBD community continually motivate and inspire us to keep going. If we don’t answer the call, it will keep on ringing and nothing will move forward. It helps immensely that we have a growing number of east coast people who support us by volunteering and getting guests to attend. We are grateful for the coast to coast support we continue to receive.

We planned the weekend well because Paul Simon was playing the last show of his Farewell Tour where his life began in Queens. In between food tastings and meeting with our event committee, we hopped on the 7 train to Queens to witness a perfect night of music filled with nostalgia inducing tunes like Kodachrome and Me and Julio Down by the School Yard, to new songs and different arrangements of his classic tunes with orchestral back up and talented musicians.

Paul Simon in Queens

I planned this weekend in NY that then coincided with Jonah moving into his new apartment in Evanston, IL. My next stop before returning to LA to dive back into to the life of chronic illness mom, aspiring relaxer, a mini detox of all NY food and drink, getting back to workouts and event planning, is to Evanston where I am going to spend a few days with Jonah who is a junior in college, helping him furnish his room.

When I am traveling with my family, they don’t miss the opportunity to make fun of me for purchasing People and Us magazines (they basically have the same non-important celebrity info in each one, yet I continue to buy both), but I do it anyway. It helps me get through the take off, landing and basically any part of the flight where I start to spiral into a fearful state as I hate flying. You can ask my family, as whomever happens to be sitting next to me during any kind of turbulence has to endure such fears as I often resort to clutching one of their arms or legs and asking over and over if they think that everything is okay. As if they know the answer. They barely look up from their book or movie, acting as though it’s totally normal for this large contraption with wings, a nose and a tail to be bumping around in space.

Back to the magazines and the point I am trying to get to. I am currently reading Us and there is a small article about Mathew Perry in the 10/1 issue that says he had been hospitalized for 3 months due to a gastrointestinal perforation.

“Matthew was very sick when he was hospitalized; his condition was very serious. A gastrointestinal surgery is very complex and the healing can be complicated”

Immediately my heart rate quickens, I can feel it pounding in my chest. I start to sweat and my breathing becomes shallow. It is not a full on panic attack but it is my body and mind reacting to what I have read because this scenario-bowel perforation and GI surgery-are all too familiar to me. Lowell has had the former and unfortunately several of the latter. This past summer, we all became more aware of the psychological impact that the medical trauma has had on Lowell and our family. I could say that this is PTSD or Post Traumatic Stress Disorder because of the physical and mental reaction I had upon reading something about what we have been through, but the Diagnostic and Statistical Manual of Mental Disorders, currently in it’s 5th update, has specific criteria for such diagnosis based on the person exhibiting one behavior or symptom in 3 different clusters, and 2 behaviors in a 4th cluster. See Here. This includes having experienced or witnessed a trauma, re-experiencing the trauma in one way or another via recurrent thoughts or trauma related stimuli, avoiding any possible reminder and 2 or more negative alterations in cognitions and mood that began or worsened after the traumatic event.

In the end, it does not matter if we all clinically have the symptoms that would label us as PTSD. The things we feel and the behavior we exhibit are enough to make the focus on these issues necessary.

It’s complicated. Lowell is still living with pain most days and it is still hard to parse out what is pain from a possible disease escalation, or does the pain have to do with the ongoing problem of being in pain? Pain signals have fired for so long and they don’t easily back off, and the anxiety about the pain, about the traumas, the worry about what’s next, makes such pain worse.

Solving this pain problem is complex. Different therapies, cognitive behavioral, somatic tracking, talk therapy, hypnotherapy, mindfulness, acupuncture, physical therapy, the list goes on of the things that he has done and continues to do that could help, that do help. These treatments/modalities don’t solve the pain immediately. instead they need to be consistently, and habitually incorporated into life.

It is hard to do much else when you are in pain and trying to get out of it. People ask me, is Lowell going to college next year? What is Lowell doing now? I don’t have the answers except mostly what he is doing and thus what we are all doing, is the above mentioned pain control pursuits, This requires most of our energy leaving little time and certainly less energy for much else. Lowell is currently in an outpatient program not dissimilar to the Stanford Pain Program we did this past winter. It is not exactly ideal for him, though it is providing some benefits and help for him on a day to day basis. Moreover, we still have many doctor’s appointments, he is also finishing up his classes on line, and I am basically full time busy with my Connecting to Cure work.

Thus, some things have fallen by the wayside. There is not much time for socializing and seeing people, for writing, for doing things in LA like going to museums, plays, to drink alcohol in a carefree way because I need to be on my best game most of the time, for house projects and more. I do piece these things together and get out to see friends on occasion (if I have not seen you a in a long time, know that this is why), I work out because that is sanity, I managed to redo our back yard with our gardener, and I made the trip to New York, and then on to Evanston. The Evanston part of the trip was mostly a success, notwithstanding the usual Ikea madness like missing screws, and the bizarre and always confusing assembly instructions.

Jonah and I put this together ourselves!

I do things. We do things.

There is a stigma about mental illness, about any kind of mood or emotional disorder. There is less of a stigma associated with having a chronic medical illness. Yet chronic illnesses often will induce psychological issues that can range from mild to severe. Having experienced IBD in our family and with all of the patients and families in our community, I know that these diseases can hit people hard when it comes to psycho-social manifestations. Most people report a mood disturbance at some point.

Can we talk about it? Can we accept that this exists and that it is a process, an ever-changing continuum of ups and downs that requires attention? That life goes on while coping with these issues?

While we have been on this path, through communicating with others with any kind of obstacle, whether it be a chronic illness, addiction, mental illness or trauma, I have learned that many are suffering, and there is so much hiding of this suffering and I am not sure if it’s the Los Angeles way that people feel the need to present a perfect, forward facing, positive front but under that cover, I have seen many holes in that prevailing story that everything is just fine, and more so in people or families coping with any kind of hardship. Although medical conditions, addiction, and mental illness are all very different, there are similar underlying causes and many of the modalities used to treat these issues can be the same.

I will get back to seeing friends more, drinks at dinner and enjoying LA’s culture. But for now, this is okay, working on our family and supporting Lowell. There is nothing else more important to me than my kids and I will never give up on the goal of better health and happiness for Lowell. That means making it a priority, while still taking time for things that are important for my own well-being.

We are not the only ones here, I am sure of it.