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Monday, August 11, 2014

"When Life Gives You Lemons" - Meet Vikiann

In my advocacy work as an adult with Sensory Processing Disorder, I've had the incredible fortune to come into contact with some of the most amazing adults who also happen to have SPD. One such person is the charismatic Vikiann Kelly-Quirk, who I met through my Facebook group, Sensory Processing Disorder Adult Support. With her background in mental health and sensitive, open demeanor, she reminds me of myself soon after my own diagnosis in mid-August of 2010. I admire her willingness to speak candidly about her feelings and experiences, and continue to marvel at her growth.

This post, written as a guest-post for CTMS by Vikiann in early July and inspired by something she'd said in the support group, expresses some of the emotional turmoil that comes about soon after an adulthood diagnosis of SPD. It's part of the process of a delayed diagnosis - of any diagnosis that takes decades to formulate, even as we fight the sneaking suspicion that we are different and something crucial is missing. Although we may struggle during this early post-diagnosis phase, we must never forget that things do improve with the right combination of therapies and shift in mindset, even if we must always contend with some degree of SPD.

Vikiann, thanks as always for being so open and for sharing your story with the CTMS readers. It's such a pleasure to see you maintain your poise as you wind your way through post-diagnosis life!

Sit back and enjoy yet another perspective in the complex tapestry of SPD.

-Rachel





Life, as for many of us, has handed me a lot of lemons. I’ve done what the saying suggests and made gallons of lemonade. Sounds fabulous, right? Fabulous often requires significant work and sacrifice. I squeezed, sometimes with both hands. Sometimes until my forearms burned. Other times I tried to gently encourage juice from the flesh. I added sugar and water and stirred. I overcame. I changed circumstances. I changed my life. I changed myself.  

Years of therapy have helped me to see the value in my experiences and have helped me to continue to move ahead. I had been working with the same therapist for almost two years and been doing a lot of deep, painful work. I had made significant progress with my generalized anxiety and depression. Both felt really manageable but there was this constant buzzing in my chest, unease, a never feeling good that lingered in me. I brought it up to my therapist and she began to ask me questions about my responses to things and if I knew what sensory processing disorder was. I knew a bit about it because I had taught nursery school and had a number of children with the disorder in my classes. But it didn’t look like me. She sent me links to a few sites, this very blog, and recommended I check out the book “The Out-of-Sync Child" by Carol Kranowitz. I’ve always been a very good student so I took to this like I did every assignment in school: I researched. I read. I studied. I did the same thing in therapy. A topic would come up and I went into student mode. Why should this situation be any different? So I checked out all the links, read this blog from top to bottom, and ordered the book. That all happened the same night my therapist sent me the information. The more I read, the more I saw myself on the screen and in the pages.

My recent work in therapy has been on connecting my head, heart and gut. When I started my SPD studies, I felt like I was doing a spectacular job of connecting the three and wouldn’t have to worry about getting stuck in my head anymore. Unfortunately, I found that I was getting caught up in my head more and more. Occasionally I would leave my student role and would find my gut telling me that no matter what the books, websites, or anyone said I had SPD. I’d feel my heart join in and would fall to pieces over potentially having this disorder, having yet something else on my resume of dysfunctions. When all three came together there was fear, pain, and tremendous relief. Regardless of how I was feeling, I continued to try the things that other people with SPD did to regulate their systems and found that some of them changed how I felt in my body. Some of the techniques did so dramatically and made me feel a peace within my body that I had never known before. I started to feel excited about feeling better in my body, feeling better about myself, feeling better in my life. But it still wasn’t enough.

During this time, I had reached out to Rachel and she referred me to an occupational therapist she had seen and found to be helpful. I made an appointment. I proceeded to freak out every day of the three weeks until the appointment. I freaked out about what the occupational therapist would find or not find. Would she find that I have SPD? Would that be a relief? Would that be awful? Would she find that I didn’t have it? If I didn’t have it, would she think I was crazy? Dramatic? Wasting her time? Hello, old issues. I’d love to say it’s nice to see you again but you aren’t the best of company. The day of the appointment arrived so I packed up my fear and anxiety and trekked to her office. I was there early of course because what other time is there to get to something? She opened the door and my whole system lit up like a pinball machine at the sight of all the things hanging from the ceiling and splayed across the floor. My eyes did a little dance and I immediately turned away in hopes of avoiding getting the usual dizziness that resulted in these kinds of situations. In that split second, I thought of Rachel’s experience the first time she walked into this very same room. I proceeded to hang my stuff up and bolt into the bathroom. I took some deep breaths and tried to focus my eyes. I rushed myself out of the bathroom because I didn’t want to keep the OT waiting. Anxiety wins over self-preservation almost every time. We went to another room that was way less “interesting” and I sat with my back to the dizzying distractions. We went through my history and the evaluation I had completed. As she checked things off, applied numbers to them, and then added the numbers up, it became glaringly obvious to me: I have SPD. As that thought entered so did another old friend: “You’re being dramatic.” I tried to push that old voice aside and doing so was made easier when the occupational therapist looked at me and compassionately said, “I think we can both see where this is going.” She didn’t even have to say those three letters or the words they stood for. I knew. I knew in my head. I knew in my gut. I knew in my heart. And I knew in all those places that I wasn’t being dramatic right now nor was I being dramatic in the past.

I left the office full of mixed emotion but held onto the relief and happiness. I immediately added everything she recommended. I had squeezed all the juice out of the SPD lemon and made delicious lemonade because that’s what I do. I see something broken in my life and I fix it. I overcome. I change my circumstances. I change my life. I change myself.

Fast forward two months post first occupational therapy appointment. I had my second occupational therapy appointment right before I was about to take my first trip post diagnosis. Traveling has always been awful for me. Pre-SPD, I didn’t understand why I over packed my suitcase, wanted to know every detail I could about the cab, the flight, the place we were staying, how we were getting there, wanted to be at the airport two hours early, checked my over packed suitcase another six times, and still felt the hornets buzzing in my chest. The hornets whirled and swirled the whole time I was away and sometimes escaped via meltdowns but always returned to their nest in my chest. Even once I am home from the trip, I still feel like my insides had been assaulted. When the chance came up for me to go to an amazing week long training and see my best friend at the same time, I wanted desperately to go but feared so severely this trip turning out like all the others, except I wouldn’t have my husband to hold me together as I fell apart. I decided that I had my tools, was going to use them, and I was going to be fine. I packed all my SPD goodies, all my fear and anxiety, and my feeling of being completely disorganized and away I went. I held myself together so tightly that when I came home, I busted at the seams and have had an incredibly difficult two weeks since.

These past two weeks definitely contributed to my husband and I having a fight of epic proportions, which is incredibly unusual for us. It was over my SPD or, more specifically, how my SPD keeps us from just picking up and going somewhere or doing more than one thing in a day. I've tried to handle this issue by asking him to prioritize the things he wants to do in a day so I can choose what I participate in and, by doing that, can be in the best possible shape. It didn't work out that way due to a variety of things having been said certain ways and other things not said at all. In this fight I found the reality of my SPD. I found my anger. My anger that SPD exists. My anger that I have it. My anger that my life has always been harder because I’ve probably always had it. My anger that my life hasn’t necessarily gotten easier now that two professionals told me I have it and ways to cope with it. The reality is I can’t squeeze this lemon into lemonade in the way I used to and I am angry about it. I feel like my wings have been clipped and I can no longer get off the ground and fly to a better location. A location where I can just go do things, maybe even more than one thing in a day, and not have to prepare for every minute of those things that I am going to do. But that isn’t my reality. I can’t do anything without preparing for it. I can’t get out of bed in the morning without preparing. I have to use a specific alarm in hopes of my system being less than completely overwhelmed when it goes off. I get up and try to feel my feet on the floor and keep my eyes half shut to avoid the light of the alarm. I have to prepare my skin by brushing it so I can get dressed. I do so in hopes of avoiding feeling like I am going to crawl out of my skin. I have to decide what to eat for breakfast based on what I hope won’t make me gag. I’m angry that this is the start of all of my days. I’m angry that all day long I think about SPD and what it causes me to feel and how I try to manage it many days to no avail. I can’t come home and relax because SPD made me run on overdrive all day so I am out of gas and crash. I am angry that I can't be excited about doing something, anything, no matter how many times I’ve done it before. I can’t be excited because that emotion gets stuck in the trunk as fear and worry drive. Only after I convince the fear to step out from behind the wheel and tell worry to move over can I hope to be excited. Even after all that work, I'm not really all that excited because I am anxious that the situation is going to change at some point and I'll have new information to tango with. 

I am angry that SPD steals my joy, my internal peace, and impacts my relationships, especially the one with my husband. I am angry that SPD impacts me every second of every day and that I don't feel even close to good most days. I am angry that SPD is so hard for people to understand, even those closest to me. I am angry that my diligence made me smarter but doesn't make SPD go away. No matter how many tears I shed, no matter how much I wish to not have it, no matter how angry I get, no matter how much I pretend I don't have it, it is still here. It is still inside me. It is still the way I exist in the world. I am an SPDer.

***
Vikiann is an SPD adult and owner of VKQ Pilates in New York City.

2 comments:

  1. Vikiann,
    Thank you for this brave and honest post (and Rachel for hosting it!)!
    I want to say brava for FEELING YOUR FEELINGS - that alone can be a hard one for us SPDers ;)
    I also want to say this WILL get easier in certain ways - you will develop both techniques for dealing with SPD issues AND knowledge and the ability to "just say no" when you need to.
    It IS so frustrating to always be the one who is "overcoming" something -- wouldn't it be nice to just be "bormal"?? OOOH - see that typo <<? I am just going to leave it in, but you know what I mean...
    However, this extra sensitivity will in time bring gifts too, I promise.
    Love,

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    Replies
    1. What a great comment, Ms. F.S.M., thank you! I just passed it along to the wonderful Viki :)

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