Sunday, July 14, 2013

Depression and Marfan Syndrome

Writing this post about depression has shaken most every core belief in positive thinking I've held and drastically changed my expectant outlook on life.
Rudbeckia hirtia, Black Eyed Susans setting seed
First let me unequivocally make clear I am not a medical professional and have no qualifications to write about depression and Marfan Syndrome other than from the perspective of someone with Marfan Syndrome who has experienced significant depression lately.

From the time I began thinking about writing a note on feeling down because of chronic pain associated with Marfan Syndrome and connective tissue disorders (CTDs), a disturbing darkness kept me away from the computer keyboard each and every time I was compelled to write.

 I even closed my Facebook account for a week, wanting to hide from all my family, friends, the world and the God who I wondered about, daily asking myself "why, if God was so good, would God not take away pain, depression and suffering?"

My sullenness and dark withdrawal were perplexing symptoms for me to comprehend as I am someone who usually exhibits an upbeat, "it will all be OK", outlook on life.

How many times have we heard "our lives are products of those thoughts we harbor"?

Our words, especially with respect to health and wealth, are supposed to reflect our actual circumstances. Yet in my Marfan Syndrome framed life vocally claiming health and wealth principles never really proved to have a real payoff.  Some said my faith was not strong enough.  Some said my God must not be the God they knew, my unfulfilled expectations a reflection of personal failure.

But I tried to put on a happy face and keep a can-do attitude.

In reality my upbeat attitude for years was mostly buoyed through wildflower photography, hiking (when I felt up to a walk) and music. I so love music, all kinds of music! Being near the ocean helped too. Working with Judy work in her garden made me happy too, before the big dissection.

In the aftermath of my multiple open heart surgeries and the onset of a host of other connective tissue disorders, my upbeat attitude started rapidly changing to more of a downbeat persona.

For a time I tried to stay positive, focusing on my wildflower photography and hiking along the seashore. But the petals, stems and stamen are not a healing God and neither was the ocean. As spring turned to summer the beauty of our Black Eyed Susans and most other wildflowers shriveled to a dried up brown. Seasonal tropical storms washed up endless stretches of trash across the beach.

My nature based emotional crutches were temporal.  Nature's beauty, music, prayer and exercise were all great tools for keeping my spirit lifted but they were only temporary in nature.  I needed a permanent fix to my deep melancholy.

Pretending only goes so far and chronic degenerative diseases are not imaginary. Realization my answers to gloom did not lie in photography, walks, distractions, expectations, faith or hope was disheartening.

I did not look sick and this made things worse. People would look at me when I parked in a disabled spot in a way I shamefully perceived as someone taking advantage of crippled elderly folk by stealing their handy parking spot.

I wanted to shout out that my heart functions at twenty five percent capacity on a good day and when I try to do something with my teenage son like handball, I walk across the court relying on strategy rather than athleticism (and still get beat).

Parking close is important if I have to carry any weight out of the store. The weight of a watermelon could fully aneuryse my existing dissected descending aorta.

I am not going to get better without additional major arterial surgery. Unfortunately and discouragingly, the doctors have talked along the lines of the required surgery being 'too risky'.

Then there was the lady who tried to be encouraging by saying something like 'getting a job would be good for you because I know you really want to support your family'. I wanted to tell her that I fall asleep for hours during the day when my heart has reached its energy limits or retort under my breath 'walking a mile in shoes'. And I do support my family through all the taxes I've paid in over my lifetime. I sincerely appreciate my disability but it is not a gift, I paid for it over thirty years.

The way people look at you sometimes when one is on disability is enough to give self esteem a black eye. 

Moreover all those daily pills and medications that kept me alive also went a long way towards killing my spirit. Jumping for joy and crying out in ecstasy was difficult when my heart was beating only once every one and one half seconds, slowed by beta-blockers and angiotensin II receptor antagonist drugs.

Pain is real for those with CTDs like Marfan Syndrome. CTD pain is sometimes debilitating beyond imagination. Fear of not knowing what the answer to the body's woes is also immobilizing. Happiness is hard to find when CTD hurt is strong. Smiles fade to frowns and laughter to moans when pain and fear induced depression sets in.

Every time a new hurt would shoot through my leg, back or abdomen I'd instantly travel back to the moment my ascending aorta dissected and aneuryzed. Panic would override the beta-blocker medication effect and my heart would race out of control, ventricular tachycardia setting pulse's pace.  New pains brought new fears and more darkness.

I'd wonder (and still do) if my still dissected descending aorta was completely rupturing and how many seconds were left before I fell to the floor, bleeding out internally, way too quick to be driven to the ER. After so many of the same episodes and so many reruns of my life flashing before my eyes I instead began to smirk and whisper "que sera, sera" but inside I felt like crumbling. 

On top of the very real pain issues lie the confusion of forgetfulness my neurologist calls mild cognitive damage, a result of collateral embolistic events occurring during emergency open heart surgeries.  Fear of unknown maladies was magnified as I sometimes could not accurately describe to others what was happening or even remember if I'd experienced the pain before.

I have a hard time with word recall and especially with short term memory. As a writer passionate about blogging, not being able to find the right word is a crushing disability. Many times I can see the thing but cannot remember the word. As a lawyer by education, not being able to open your mouth and express what you want to say is a career killer. More good reasons to slip into the depths of a fathomless dark void of despair.

Getting used to drooling, stuttering and speech difficulties was not an encouraging exercise in joyful life anticipation either. I tried to hide my sadness. Hope prevailed for a while, until my spirit could not find the energy to animate another upbeat moment.   Hope then became just another unfulfilled expectation.

The time had come where I was finally tired of pretending I was not depressed. So I thought I'd write a post article on the topic and possibly I find help there.

Maybe I'd gain insight. Perhaps someone else out there would have an answer.

First action I took was to message some of my friends and acquaintances who I knew were confronting chronic debilitating and even potentially terminal illnesses, asking them how they dealt with depression.

The three questions I posed were:

Question One: Why do you think connective tissue disorders (CTDs) are so prone to having depression associated with them? Is this a physiological, chemical or emotional issue?

Question Two: How do you think depression and fear play off each other in people with CTDs?

and Question Three: Any other thoughts on Marfan, CTDs and depression/fear?

Expecting many thoughtful answers to my question, as I had received many times before on other inquiries, I ended up receiving only a couple of replies.

I felt shunned and even more depressed. Probably those who I asked to share how they dealt with depression had a similar response as I had and wanted to distance themselves from a depression discussion.  Seriously, who wants to talk or read about depression?  I hid mine for quite some time by appearing to be so upbeat. 

But the silence was disheartening. My perceived expectations were once again shattered and I sunk even lower in spirit, feeling like I didn't want to write again.  Totally out of character with my past, I even put my beloved camera away on the computer desk.

Then, over the next month a couple things happened that began to help my understanding of my blue disposition.

First, I started to receive feedback from those I'd solicited about fear and depression. Their replies alone provided me with a spark of enthusiasm.

The initial reply came from Pamela L. Evans-Schink MA, LMFT, CCDVC, a Marriage and Family Therapist turned homeschooling mother of two boys. Pamela practiced psychotherapy in Connecticut and New York for ten years before moving to California with her family. Both Pamela and her two sons are affected by Marfan Syndrome.

Mrs. Evans-Schink had the following responses to my queries about depression and Marfan Syndrome;

Question One. Why do you think connective tissue disorders are so prone to having depression associated with them? Is this a physiological, chemical or emotional issue?

Answer:  I think People with Marfan Syndrome or another Connective Tissue Disorder are frequently in a great deal of pain. Living with constant pain is both physically and emotionally exhausting. Commonplace activities become insurmountable. Favorite activities are given up. There is a great deal of loss and mourning of the individual's previous life.  Often times, people in the affected person's circle don't understand the pain and exhaustion because it is not visible and they have not experienced it themselves. Sadly, this can sometimes include doctors and psychotherapists. I think it is especially unfortunate when a doctor or psychotherapist thinks that treating the depression will eliminate the pain. If the depression is a result of chronic, physical pain, then the providers are essentially chasing a ghost if they do not understand both the psychology and physiology of someone with chronic pain and illness. This lack of support can lead to a feelings of isolation and failure in patients, which would contribute to depression.

Question Two. How do you think depression and fear play off each other in people with CTDs?

Answer:  With Marfan Syndrome, the depression might also be accompanied by fear. Because of the serious cardiac risks involved with this syndrome, people might fear for their lives. People might wonder how long they have to live or if they will survive Cardiac Surgery. Surgeries can be terrifying. And for some, there seems to be no end to surgeries as various organ systems become affected and require repair.

Question Three. Any other thoughts on Marfan, CTDs and depression/fear?

Answer:  Another contributing factor for parents who have Marfan Syndrome or another CTD who have an affected child or children could be guilt. Patients with Marfan might become overwhelmed with the guilt of passing on the gene mutation to children. It is especially hard to watch one's children suffer. Having your child or children be affected by a complex, incurable condition is a terrifying prospect no parent should have to face.

The feelings of guilt and fear for one's children could add an extra dimension to the depression of affected individuals.

Depression can also be a side affect of many medications. Many Marfan patients are on a whole host of medications, including heart and narcotic pain medications. I might add that certainly some individuals might suffer from depression for other reasons as well.

Depression is a common condition that affects the general population and should not be taken lightly, whatever the reason.

Mrs. Evans-Schink's comments concerning fear hit home with my dread of the unknown symptoms, a worry that my pains could either be a cramped muscle or the deadly aneurysm in my descending dissected aorta. Others responded and I became somewhat encouraged.

Soon I even retrieved the camera from the closet, venturing outside to photograph Judy's backyard wildflowers. Other respondents agreed depression and chronic illnesses such as connective tissue disorders and Marfan Syndrome run hand in hand. Coping mechanisms included meditation,  exercises, healthy and cleansing dietary practices, fasting and prayer for depression.

The second important event part my recent bout with depression occurred as I watched a patch of Black Eyed Susans in back yard turning brown and starting to look ragged and withered. At first I sneered and lashed out at God and the universe for creating complex, beautiful life only to allow way too soon dying and withering to then take away forever.

Like the flower, my life had so much promise even in the recent past. But after my dissection nineteen months ago and unfulfilled expectations manifesting themselves with the chronic pain of connective tissue issues, my thoughts became more despair based.

Sometime after I tried to start writing again, through a variety of conversations and interactions with college friends, family, those friends in social support groups and others, a thread of answers about my depression questions began to coalesce.

My friend from college, Bob suggested that God is actually here and that God's voice can be heard in nature, as in the sounds of a flowing creek.  A couple days later on a hike out through Princess Place Preserve a strong, gentle wind came up from behind me, surrounded me and I really did feel the hand of God rubbing my neck and back, holding me with love.  I wanted immense amounts of love and if God really was love then maybe I'd found a source.

I started doing more with my teens, playing handball with Ruairi despite the pain, going fishing with the kids, continued calling my Mom and Dad every night to tell them I love them and spending time with my father-in-law over coffee.  Judy and I would drive to Malacompra and listen to the Atlantic waves crash over the weathered coquina stone.

Another of my college roommates reached out with kindness. Those wonderful friends in the Marfan support groups across the world too were there any time help was needed.

For the brief while my Facebook account was closed during my depths of blueness, they reached out in love to my wife to express their love and concern for me.

And my wife Judy was always there, allowing me space and offering unconditional love as she always has and always will.

Maybe, through no one's fault but my own, I'd been missing out.  Perhaps all my unfulfilled expectations could be satisfied here and now.  I started thinking that maybe I was looking for something in the future that was already here and all around me.

Two things began to stand out. The first was the idea that finally reaching some destination was not the deciding factor for achieving happiness and avoiding depression. Rather the key was appreciating good things in the journey we take through life here and now.

One of my mantras quickly became "focus on the journey not the destination". This was critical to turning my blues around. I'd been in a "I don't have" and expectation mode most of my life.

Now I've ditched expectations and instead am in the thankfulness mode. When expectations and anticipations failed to materialize, depression overtook me. But when I ditched the expectation mode and started appreciating the here and now my attitude began to change.

I did not have to wait for Heaven or God. The good (sometimes super duper good) was here now too, woven in with the bad (yep, sometimes really bad). Instead of stuck in the bad waiting for the good to come I finally saw that the good is already here.

The dried, withered and brown petals of the dying Black Eyed Susans held hundreds if not thousands of seeds for future life. Before I saw only a loss of youth and beauty in the late summer wildflowers.

Wildflowers bloom, set seed and die.  This is life.

Now I see magnificent complexity and beauty in the brown and dry and in all the seasons of life. Same way with the broken stem flower and the torn wing butterfly searching out for remaining nectar traces. Heaven and happiness is here right now and we don't have to wait, we just need to see the good.

Sure there is the chronic pain and many daily disappointments, but no longer do I need to wait on unfulfilled expectations. I am surrounded with such wonderful friends, family and an amazing world. Learning to love the journey really has been an experience that has freed my soul.

No longer am I chained to a constant disappointment from missed or unfulfilled expectations. Focusing on the beauty of the here and now, even if there is collateral pain and suffering, has freed me. For me Heaven and God are here now. And this is different than the 'claim health and wealth' mentality that I flee from.  For I now recognize that the pain and despair are real and here and not going away just because I invoke a supernatural name or phrase.  But I can handle the bad because unlike the 'claim health and wealth' mentality, I now don't have to wait for the good.  All I need already surrounds me.

The love of friends, family and even strangers is the ultimate fulfillment of any anticipation. A life of happiness was always here. I just did not see it.

Instead I saw dark depression.

Now I seek out love.

But I think I am lucky. I think I may have a severe case of situational depression brought on by my chronic pain and living on death's doorstep each heartbeat, moment, hour and day. Others may have imbalances in their body's biochemistry that require much more serious medical intervention.

Don't get me wrong. I did not solve my depression issues with the grasping of some Aristotelian logic surrounding the concepts of love and being here and now. I still sink into fear and despair when a new throbbing pain surges through my body and I wonder if the time has arrived.

I still find myself down in the dumps when thinking of giving up Scuba and other life activities. Sometimes I lie awake at night for hours listening to my mechanical heart valve tick in time and rhythm to some obnoxious song stuck in my mind.  But great love overcomes all else.

And there are still way too many unanswered questions I have about what is happening to my body. For instance, my right foot has grown two sizes in the last year while my left foot has shrunk a size or so, presumably due to my dissected descending aorta. My cardiologist didn't have a clue and neither do others I've asked.

Yet while the fear of the unknown remains and causes me grief on a daily basis, I don't waste my time looking for hope or fulfillment of my old expectations anymore. I've found Heaven now, today, here on earth manifested in the love of my wife, my family and my friends. This love is Heaven. This love is here and now. This love is the fulfillment of all my expectations.

So like the Black Eyed Susans, the wilting and withering are real and not going away. Neither is the chronic pain those with connective tissue disorders have.

But whereas pretending only went so far before and the answers to my gloom did not lie in distractions, expectations, faith or hope, I now know where to look.

I think the answers to my questions about beating my depression lie in the indescribably magnificent love of those individuals touching my life yesterday, today and forever.


  1. So beautifully written and such emotion harbored in each word... Kevin, you are simply amazing and we Marfan people have endured soooo much because of our "invisible" syndrome.. I too have felt your sadness when I have to use my cane and put on my braces.. I surely don't LOOK sick.. the stares I get are shocking to my system as is the fear of life without my mobility tools... I love this post! ♥♥♥♥

  2. Kevin, you write so honestly and expressively. I'm sorry for all that you're experiencing, and also admire the way you do it. Alive, deep, thoughtful - and I'm sure you're insights are extremely helpful for others! I'm sending you a very big hug and hope that today is a good one - and tomorrow a better one! Love, Michaela

  3. Well said ! "....but I think I am lucky..." - it has struck me also - living closer to death make life som much more lively and easier to appreciate. Keep strong & all the best from Sweden / Timo Söderlund

  4. Thankyou for writing. That's all I can say lol I got sick when I was a baby, was diagnosed with marfans when I was 5 and im now 22. Had open heart surgery 2 years ago with 2 valves repaired. Just resigned from my job of 4 years due to back pain... dr's don't know if the pain is caused by my scoliosis or the 2 large Tarlov cysts they've recently found in my lower spine. Saw a good surgeon about it and he's never seen such large cysts... he was heading to a conference in mexico with all the best spinal surgeons in the world and took my scans with him hoping to find a dr that might want to help me but I never heard back... it's really only painful when I'm working though so I'm looking for something less physical, an office job, what I always said I didnt want to do... looks like I don't havea choice lol the other thing that is affecting me is a large venous malformation in my right forearm which has been growing bigger since I was 8yrs old and it's gotten to the point where I have pain almost daily and it makes me so depressed I end up laying in bed for days at a time... my depression, whether I was doomed to end up in your mental state or what, but it was worsened by the medication I was on from age 8 to 18... 10 years of my most important years of growth, my beta blockers (noten) which worked wonders for my heart, were messing up my head! I remember when I was 12 crying for no reason, I wish so much that someone could have picked it up and helped me but it wasn't until I was 18 and put myself in hospital, attempted suicide that they realized and changed my meds... i'm now studying counselling because I want to be a high school guidence counsellor and help the kids like me that slipped thru the cracks. I had anxiety so bad thru highschool that I couldn't speak. People come to me these days after school and say "wow you like never spoke at school, we thought u were a mute"
    and I volunteer for a fund raising committee that's working towards raising suicide awareness and prevention in far north queensland (australia)

    Anyway so I've just searched for marfans groups on fb today... was having a really bad day today, I basically slept all day into the night. A few years ago my mum had joined a forum for marfans people in australia and I started talking to a guy who was a couple of months older than me... we talked for years... he was in a car accident 3 years ago and didn't make it... the rest of the passengers were hardly hurt and it's just made me realize how sick we are... and its really really depressing! Lol I can't imagine how hard it would be to find out u have marfans later on... i've known since I was 5 so I was a little better prepared for having major surgery or knowing that it will be difficult to have children etc...

    anyway I'll leave it there... thanks for ur blog entries, I will be reading on!! :)

  5. Oh and I wore a back brace for 2 years in highschool which was really hard... the day I had an apple thrown at me and it hit my brace which was hidden under my shirt... I was speechless... everyone starred at me lol and the boys that threw the apple laughed...

  6. You are a strong, awesome person and I know you Kevin. This will not get you down. I take great pride in being your sister and although you have had more than your share of situations to deal with, I receive great strength from you with your attitude and your will to keep on keeping on. Do not let it get the best of you. We all need you. I love you big Brother! Sussa

  7. Thanks for writing this. I learned a lot. Most of which was that we are all learning the same different times in our lives...surrounded by different circumstances...but the core lessons are the same. Cheers to you for your courage to not give up and enjoy each beautiful moment as we journey around our great sun. Much love to you Shawn

  8. Kevin- I love this. Thank you for writing it. It's such a powerful and honest piece. I am going through much of what you are going through right now. Also, thank you for asking me to be a part of it. I'm honored. xx--Pamela

  9. Unlike the respondents here (I don't have a CTD nor am I your sister), but I know you come from good stock. With every post and blog of yours I read, I envision ur childhood home on a hill, measured in inches, in Hialeah, and know that your parents gave you a loving base from which to start. It sounds as though you have built well on that base and your life and family are your wealth. I am so sorry to hear of all your pain but see that your talent in expressing and writing about it is a gift to others.

  10. Hi Kevin,

    I enjoyed your article immensely. What a fascinating account of finally finding The Now. I've been more fortunate, in that my issue has been simply an AAA of 6.9, self-diagnosed, followed by insertion of a stent (who I call Rupert), and then slowly overcoming the shock and fear to return to life as before, but completely different than before. I had a brush with death (I knew that when I saw the MRI), and made it through pure luck and some body awareness training. So I left my scientific career of 40 years, and now spend my time blogging in order to reach out to people who have survived surgery, or know they have an aortic aneurysm and will need surgery one day, but they feel that they are living with a time-bomb. Fear is the big one, and then lost dreams, all of which can be addressed by living here and now; easier said than done - sure am glad I took up meditation long before this experience of three years ago.

    I do not have to deal with constant pain, though I have a friend with a severe connective tissue disorder (autoimmune), and I watch it drag him down.

    Write on, and continue to be an inspiration to others, as you are to me.


    Another Kevin aka FitOldDog

  11. Wow, Kevin, such good writing. Really extraordinary.