Coping with Grief and AS

breatheI was planning on writing about how people with chronically painful illnesses are dimensional and should not only be viewed through the lens of their disease…and it would have been a mighty post and it would have inspired many, but in fact, that’s not my mindset right now.

Right now I am in grieving. I am grieving the person I used to be…the person that once was.

As soon as I was diagnosed with Ankylosing Spondylitis, a new realm of support opened for me with my healthcare providing system of insurance-izzle HMO. I belong to a large HMO that really doesn’t want to see its subscribers. Not seeing its subscribers means banking that “not seen subscriber” (premiums) money. Banking that money allows it to remain an operational entity and to support those who are actually seen. (Listen, I’m not picking on my HMO, I’m just stating the secret behind its success. I have had great care with this HMO, I even declare that I am a “K****r Baby!” I was born there! I only knew this singular HMO…it was the insurance my father carried and it was the insurance my first employer carried…it’s the insurance through my husband’s work) But I digress.

When I was diagnosed with A.S., suddenly a golden door opened for me and I was immediately offered physical therapy, acupuncture, a script for massage therapy (which I now deduct from my taxes as a medical cost.) I was offered medicines of all varieties and referrals to the upper echelon of medical professionals…the Rheumatologist, the Neurologist, the Orthopedist, the director of the actual Spine Clinic and the Psychologist.

The Psychologist. The Psychologist, with some sort of Masters in Grief Therapy.

Why would I need a Psychologist with a Masters in Grief Therapy? The answer is, it was time to start grieving the losses I was now facing and the ones that were inevitably coming. It was time to release the old me and deal face to face with the current me and look forward to what might come.

Of course I had made the appointments with the Rheumy and I had scheduled the acupuncture. I quickly booked myself consecutive massages with my favorite therapist and I even exchanged emails with the dude from the Spine Clinic. Soon I was getting calls from Neurology and Orthopedics; they were ready to see me. I even got to get my super special spine x-rays at 3 in the morning when they do that sort of super specials secret agent x-rays in the deepest bowels of the hospital (hey…I was trying to keep my sense of humor.) I kept forgetting to call the Adult Psychiatry Unit. Somehow I remembering to call them back after 5pm.

Finally I called them during business hours. They had an appointment open in 45 minutes. “Can you make it?” the receptionist asked. “Yes.” I replied.

I got myself there and walked in. The lady at the desk was the same one I spoke with earlier. I know because she had a faint Irish accent and in some way it reminded me of an old family friend and I felt at ease. She gave me forms and said that I needed to fill them out. I complied. I sat in a chair and filled out papers. There were lots of questions and as I checked boxes and filled in the words to explain why I “If you checked yes…” I thought to myself, this Psychologist won’t even have time to read all this before he sees me. This is a waste of my time. But then I wondered if the Psychologist was actually watching me on closed circuit TV to see what kind of patient I am. Am I compliant and filling in the pages with the details of my life? Am I ambivalent and loosely leafing through these pages intending to answer them at a more convenient time? Am I writing the thesis of my emotional life on then blank backsides of these forms so that someone, someone would finally understand me?

I was compliant. The form clearly stated, in bold caps, that the information collected from APU patients remains in a separate medical file only to be disclosed at the discretion of the Head of the Adult Psychiatry Unit. (My secrets might be safe!)

My name was called and I walked down a long hallway. Of course, it had to be the last little room, the farthest and as I walked, in excruciating pain, the Psychologist met me with an open hand. I shook his hand, made eye contact and sat in the closest chair I could find.

I didn’t even know why I was there. I was kind of ticked that the co-pay was $75 as compared to my regular $35. I thought for $75, I could invite my closest girlfriends out for dinner and spill my guts about what it’s like to get a devastating diagnosis that will from this day forward cloud how I live your life. I really did try to not be sour over the copay. I shushed myself with my internal voice. I mean, what’s so bad about this? I have a copay, I have a health system, I have an HMO, “Get over it Karen,” is what I told myself.

We sat silently as he looked at his computer, read my diagnosis to me and then clicked a few tabs. His first question was, “Do you understand your diagnosis?” I affirmed that I understand it, that I had Googled the heck out of it, that I did indeed understand that I had a spine that was fusing, a plantar facii that the freaking out, that my ribs were having an inflammatory conference and that I had something in my lower body called a sacroiliac and that it wants to now live a life without joints, oh and that there might be something wrong with my neck and I have these gene in me that I probably gave to my son!

He told me that patients that are diagnosed with a severe, chronic, debilitating or terminal disease are offered counseling so that they can process their way through it. I wasn’t feeling very terminal. I was feeling debilitated and my pain was severe and I had learned that these disparate symptoms now add up to something I now know as chronic. I am now chronic.

He asked me if I knew that stages of grief. I affirmed that I did.

I interrupted and went back to “chronic.” I explained to him that I understood what chronic means; it means constant, continuing, recurring, always present. I am now, presently, living in a body that has a named chronic condition.

I am now living a new phase of my life, that involves the continual and recurring pain, stiffness and complications.

He said that I was already processing myself through Stage One of Grief: Denial. I still wasn’t certain what I was grieving, but I was earning kudos from a stranger with diplomas on the wall and letters after his name. I was feeling compliantly pleased with myself. He reminded me that the first reaction in the grieving process is denial and I clearly was not in denial.

Oh no…no denial for me. I jumped into the deep end of understating this disease. I contacted national associations, I read medical blogs. I joined support networks. De-Nile is a river in Egypt and I was clearly sitting in a small Psychologist’s office in California. I was not denying the reality of my disease. I was in fact embracing it. I ordered a blue ribbon bumper sticker from Zazzle! I was considering what my A.S. tattoo might look like! I was not rationalizing my emotions, I was not using defense mechanisms. I was not blocking out the world or hiding from the facts. I was surfing on this first wave of pain and understanding.

He asked if I was angry about my diagnosis. “No,” my answer was sincere. I also acknowledged that I knew that one can swing along the pendulum and experience the stages of grief out of order, that indeed that was no right order. He told me that denial can often lead to anger. I told him that I am okay with being vulnerable. I impressed upon him that when I am ready to get to anger, I will aim it as my Thoracic 5/6/7. I laughed. He did not.

In truth, I told him that I meditate and one of my meditations is to still myself and imagine my blood flowing through my body, I start at my shoulder and imagine the plentiful red blood cells along with their pals the platelets and of course a few white blood cells and that ocean of plasma, just floating along and then whoosh into the heart, down to the atrium and wow, look at that valve go…now into the ventricle and BEAT-BEAT it’s off to the lungs, kicking off the CO2 and picking up the O2. Back around and whoosh through the other half of my heart out to the extremities and as my blood flows. I conjure the image of a tiny little scoop that is picking up the junk, the debris, the pain, the inflammation and the disease. The scoop brings all of muck to my left hand, which I open, palm up and the scoop leaves it there, in my bare palm. In my meditation, my left hand is heavy with phlegmy goo, sticky stuff, sacrificial isotopes. I don’t know what’s in my palm, I never look. I just offer it up to the universe and it feels as if my palm is then wiped down with a warm cloth. In my meditation, I am cleaning my body of this debris.

We sat in silence. Sometimes silence is okay.

Then I told him that I will be angry at some point and I can’t guarantee that I will express it in the most appropriate manner, but I will not harm anyone, including myself.

We next spoke of bargaining. I know that when we feel helpless and vulnerable we often need to regain control. Bargaining is a super fun way to try an attempt at returning to normalcy. If only I didn’t get this gene…If only I had pursued answers to these pains earlier…If only I had asked the right questions… If only I had eaten more kale…If only I had stopped drinking diet soda earlier…Where do you stop when you are bargaining with your autoimmune system? I can’t make a secret pack with my body. I know that bargaining is a defense that will only keep me from the reality of what is happening inside me.

Next he asks if I am depressed. Again, I answer with my truth. “No, but I am really sad and confused today.” He cautions me that depression is very common and I tell him that I am pragmatic. I have ups and downs, but I am ok. He orders a prescription of Prozac. I don’t argue when he tells me that it might also help the neural pathways and alleviate pain. Okay! I’m sold. I am not looking forward to the life changes that will come, but I know that I am capable of many things. I think about my boy and I know my body created a place for him and nurtured him and delivered him…my body is a freaking rock star! My body can handle this A.S. stuff.

I offer the final salvo. I announce that I don’t know when I will accept A.S. as my diagnosis and when I will accept the changes and the choices ahead of me. Not everyone gets to acceptance he cautions and he speaks of the warning signs of pain medicine addiction and avoidance behaviors. Today my goal is to cope with it, acceptance comes for a visit when it is ready.

And now we have this day, this day in May when I should be taking steps and walking my AS. off—this day I saw a Spine Doc to deal with the advancing stenosis in my foraminal cervical joints. That good old A.S. likes my neck these days. I think it’s good that it is leaving my S.I. alone for a bit. I imagine my gooey hand.

I am in so much pain I can’t meditate. I cry instead. I cry and I blubber. I call my sweet husband and he can’t understand a word I say. When I stop long enough to breathe, he tells me that he’s coming home and he’ll go see the doctor with me. I cry more.

I cry because I am not the person I used to be and I never thought that I’d be the person weeping on the phone. But that’s who I am right now.

I racked up 2290 steps today.

That’s all I have in me and I accept that. I think that a decade ago, I would have topped out at 13k, but that’s not me, that’s not who I am right now. I don’t know how to help anyone else who is in the process of grieving their diagnosis and the eventualities of this disease, but I do know that acceptance comes when it comes and we don’t always know when. Just keep your palms open and when it comes, shake the hand of Acceptance, make eye contact and sit in the nearest chair.

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Karen Fitch

Karen Swank-Fitch captains Team Fitch Feet in their second year participating in WYASO. Her family is based in Northern California. A former educator, she is now a dedicated stay-at-home-mother and community organizer and volunteer. Raising her 3rd grade son is one of the greatest joys she has ever known. She's been with her husband for 15 remarkable years. Karen was diagnosed with Ankylosing Spondylitis in mid-2013. Admittedly, it was not the summer she had planned for her family. Through education and support from her medical team and her family, friends and community, plus sheer will, she has become a vocal warrior in her battle against A.S. She is a genuinely upbeat woman and learning this new paradigm has slowed her down. She looks at the lessons she is learning about herself, her body, and how she fits into her world. Presently she's working on a manuscript of poems that deal with the grieving aspect of facing a life altering disease. When she's not enveloped in her role and wife/mother/warrior, she can be found volunteering her time.

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7 Comments

  1. Nancy Haas

    on May 14, 2015 at 10:29 am

    Reply

    ,may I ask what your age is? I was diagnosed at the ripe old age of 23. If and when I hear from you, I will share my background with you.

  2. Karen Fitch

    on May 14, 2015 at 11:52 am

    Reply

    Hi Nancy. I am 47…and Kicking A.S.!

  3. Richard Howard

    on May 14, 2015 at 3:06 pm

    Reply

    Karen, thank you for that wonderful blog. I found it very touching and relatable.

  4. Karen Fitch

    on May 14, 2015 at 7:47 pm

    Reply

    Thank you Richard. Sometimes as a writer you have to decide how much of the veil to pull back. Writing this blog has allowed me to voice my thoughts and feelings about A.S. I am pleased that people are reading and getting it and maybe just maybe bringing us closer together as a community. I appreciate your time to read and reply.

  5. Ethan Kristopher-Hartley

    on May 18, 2015 at 5:18 pm

    Reply

    Thanks for sharing this Karen. It’s a beautiful, heartfelt and honest account of your experience. You are a star!

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