Project: College Support Group

[Image shows three spoons on a laptop background. Overlaid is a clipart of torn white notebook paper with a red paperclip. On the paper in black text reads “Project: College Support Group”. Below is a white clipart of an awareness ribbon and below that is small red text is the URL for Thee Crohnie Grace Blog]

I remember being in the hospital on my 18th birthday, in the hallway outside my room there was a poster pinned to the wall. It talked about a support group for people with IBD, they were going bowling that weekend.

I remember thinking how cool it must be to live in an area that had something like that for their teens and young adults. Living in my town, you may have one or two students here or there with IBD, but not really enough for the basis of a support group.

Over the last month of so I had discovered two girls who I had gone to school with and one I had played soccer with had been diagnosed with mild gastroparesis. It then occurred to me that while there may not be a plethora of people with one specific illness, that my town was actually filled with people with various chronic illnesses and mental illnesses. Which makes sensing knowing that 1 in 2 adults will be diagnosed with at least one chronic condition now.

I thought to myself how fantastic it would be to have a group at the college where people of all health conditions could come together to receive support, to raise awareness, and to do fundraisers and stuff for charity. At the time it seemed like a distant idea. But then one night at 1am, I decided I was going to make that a reality.

I emailed our student services and disabilities advisor and told him about this idea I had. In the meantime I began to look for students, whether they had depression, anxiety, gastroparesis, or even a few students in our area with other illnesses, such as Friedreich’s Ataxia.

I figured with the number of students I knew, and probably the hundreds of students I didn’t know, that made a solid base for a college support group club. 

[Image shows a geometric background with shades of yellow, green, and blue. There is a white banner with the gold WV logo and then blue text that reads “Parkersburg West Virginia University” and white text below the banner that reads “Support Group”.]

To be completely honest I wasn’t really sure where to start, I initially created a Twitter in hopes of finding more students who would be interested in such a thing, while also creating a Facebook group for organization and planning.

Luckily on Wednesday, the college SGA held a meeting about clubs. They held the meeting to discover which clubs were active and which were inactive. Despite not being an official club yet, I went anyway and signed in, and actually learned a good bit about how clubs are formed and ran.

That night I scheduled a meeting with the advisor, I began writing a constitution and by laws that are necessary. I filled out the application for the club that has to be approved. And I put together sample brochures/posters with all the information about what the club would do.

[Image on the left shows two stacks of paper on a table. On the top is the brochure which says “WVUP Support Group” and then contains various photos and information at the bottom. The other stack of paper says “Constitution and By Laws”. The image to the right shows me holding a binder and in the front of the binder shows the same brochure page from the photo to the left.]

I then needed to find officers to fill the necessary positions to start a club: President, Vice President, Secretary and Treasurer. I ended up finding three extremely passionate people to work along side me to make this club everything I hope and dream about.

[Image shows a girl with blonde hair pulled back and glasses in a purple shirt next to a man with brown hair and glasses and a purple shirt. They are holding a poster that says “You don’t have to walk to be beautiful” and then a orange banner over the photo that reads “We can #StopSuicide”]

Meet Alexis Jackson, our Vice President, who has struggled with depression and anxiety for a long time. She spends a lot of her free time raising awareness for suicide prevention and is also a member of #Anna’sArmy, a group started locally to help raise awareness of Friedreich’s Ataxia. She is dedicated to helping others and I am glad to have her on our team!

Next, our Secretary!

[Image shows a girl with long brown hair sitting cross legged on the grass, she is wearing a white shirt with orange text that says “And So I Kept On Living”, she is holding a piece of paper that reads “I Kept Living Because I am a WARRIOR and I refuse to let my depression take victory over my LIFE!”]

Kyleigh Hawes is our Secretary, and rightly so as she is a journalism major at WVUP, and has interviewed me already about the support group. On top of being our Secretary, she is also a feminist and suicide awareness activist, she has stated that this cause is near and dear to her heart, which is huge. She has such a kind heart and I’m glad to have her on our team!

And lastly, we have our Treasurer…

[Image shows a guy with short brown hair in a yellow and black tartan shirt sitting at a piano in a room.]

Dustin Digman is another student at WVUP and also our Treasurer now. He too struggles with depression and anxiety and is a close friend of our VP, Lexi. He has a tattoo of a water color semi colon which tells a bit of his story and part of Project Semicolon. “A semicolon s used when an author could’ve chosen to end their sentence but chose not to. The author is you and the sentence is your life.” He is a very genuine guy, and I’m glad to have him on our team!

And of course there is me, I am the President. I’ve been a long time activist for Disability Rights and raising awareness of chronic illnesses. I have Crohn’s, an ileostomy, Gastroparesis, an NJ tube, Ehlers Danlos Syndrome and am a mobility device user, as well as I have OCPD and probably POTS.

[Image shows me in front of the college by the banner that says “Welcome to WVU Parkersburg”. I’m wearing my glasses and a floral sweatshirt, carrying my cane.]

With this incredible team we have already put together plans, our first organizational meetings will be next week, to work on an official meet day and to talk about the projects we already have planned.

Lexi has already found a few things for us to do, starting with next Saturday an “Out of the Darkness Walk” to promote awareness for suicide prevention, we are also working with her boyfriend who is a member of the Gaming Club on a joint fundraiser such as a Charity Gaming Fundraiser that are often seen on Twitch, and then on October 12th at WVUP there is a blood drive taking place in which we will be giving away cookies to people who donate blood.

On top of this, with the help of my graphic designing friend, Mike Mort (who runs his own online shop, as well as blogs and works with Make-A-Wish) we have created a logo for the club which will also be used for our club t-shirts once we get the funds!

[Image shows a black girl stick figure in a manual wheelchair in a blue shirt and khaki pants, then a boy with pale skin and red hair in a grey hoodie and jeans using a cane, next is a girl in a yellow shirt and pink jeans with brown hair and an olive skin tone holding a book and has a feeding tube, then a black boy with  a green and white shirt and black pants with white sports stripes and has self harm scars on his arm, lastly we have a olive/tan skinned stick figure with brown hair and a yellow polo shirt and jeans in an electric wheelchair. In blue text bellow it reads “WVUP Support Group”]

Using the logo we have designed t-shirts for when we start doing fundraisers so people know who they can come to with questions or concerns, like uniforms but much more casual and comfortable.

Overall I think this is going to be a positive impact on the college and community and hopefully will help the students and create a sense of support and community amongst those with with chronic/mental illnesses or disabilities.

It makes me so happy to see my small vision become a reality with the help of friends and faculty members.

 

Follow us on twitter @WSpoonies 🙂

 

Behavioral Therapy: A Casual Update

[Image shows three spoons laying on a laptop keyboard. Overlaid is a clip-art of torn notebook paper with a red paper clip. On the paper is the neurodivergent rainbow infinity symbol and reads “Behavioral Therapy: A Casual Update”.]

Over the last couple months, my therapist and I have been working on a lot of different things which she classifies as behavioral therapy.

We started with learning to identify emotions, having to journal everything I did that day and how it made me feel since we discovered I’m not good at identifying emotions besides “I feel awkward” or “I feel overwhelmed”.

So we expanded on those, and then started to work on identifying why I thought I felt that way. This was much harder since I often explained how I felt by “I just do”, but learning to expand on why I felt a certain really helped me understand some of my more irrational feelings.

And with that we started working on how what we think about a event can then cause emotions and how those emotions determine our behavior and working on changing our views about situations in order to better the outcome of our response to these situations.

We got a bit side tracked though after a few sessions where I was getting overstimulated and had to spend the last couple sessions finding ways of calming me down from my meltdowns. Which has led us to the next step in our therapy: Dialectical Behavioral Therapy. Which she tried to explain to me exactly what it meant, but was a tad bit confusing so she printed me off a booklet from DBT Skills Training Handouts and Worksheets by Marsha M. Linehan.

[Image shows a stack of papers that read “Distress Tolerance Handout 1: Goals of Distress Tolerance” and then reads “Survive Crisis Situations without making them worse”, “Accept Reality: Replace suffering ad being “stuck” with ordinary pain and the possibility of moving forward”, “Becoming Free of having to satisfy the demands of your own desires, urges, and intense emotions”, and “Other:___”  ]

It talks  about when to use your crisis survival skills, such as when you have intense pain that cannot be helped or won’t go away (great for me since chronic pain is a normal thing), you want to act on your emotions but it will only make things worse, when your emotions threatens to overwhelm you, when you are already overwhelmed, in highly stressful situations, etc.

Then it goes into some skills or things you can do to help such as the STOP Skill (Stop, Take a step back, Observe, and Proceed Mindfully), making pros and cons on acting on crisis urges, TIP Skill (Tip the Temperature, Intense Exercise, Paced Breathing and Paired Muscle Relaxation), Distractions (Activities, Contributions, Comparisons, Emotions, Pushing Away, Thought, Sensations), Self Soothing with the 5 Senses, ways to improve the moment, and Sensory Awareness,

She wants me to practice at least two of these each week over the next couple sessions and find which ones help me and which ones don’t work. We have also worked on breathing exercises and grounding exercises which have both been helpful so far as long as I have someone else helping me through them, I have yet to lead them with myself.

But she is hoping for me to learn a handful of them before I go on my family vacation so that I can fully enjoy it with minimal meltdowns. While I’m not psyched about having therapy homework over the summer, I will say that I have never felt so good about therapy. Knowing why I feel the way I do, how it works, and how to counteract it and all explained in a non-cliche way that I can really understand and appreciate makes a huge difference. It’s been really helpful so far and I think that the more I work at it and the more I learn the better it will get.

The Struggle of Getting Into Therapy

When you’re under 18, I consider it easier because my mom or dad could call and schedule things for me. It’s just a fact of the matter that when you are depressed, you really don’t care too much about trying to schedule yourself for an intake or getting into therapy, even when you know you need the help.

Back in September when I was dealing with the stress of just having my ostomy surgery done as well as starting college I began to spiral back, I could list all my symptoms and issues but really it doesn’t change the fact that I found myself being taken to the ER one night by my boyfriend after hurting myself. I had been trying to get into a local area for a while for therapy but it is hard to do so when you cry every time you pick up the phone. After playing phone tag with doctors for a month, you start to feel like it is impossible and that this is a sign that help wouldn’t even make a difference anyway.

Eventually things got a bit better and I wasn’t as depressed so then I didn’t bother calling them at all, but things would spiral, people would tell me to get help, I would call to schedule and intake, they’d say they would call me back, they don’t. It’s always the same struggle.

But low and behold with the help of some doctors I have an intake scheduled for February 22nd, they mailed me the papers.

It is really hard to explain to them on the papers themselves that some of the symptoms they are looking for aren’t caused by the depression but by everything else. “Check the box for fatigue.” Well… you see… when you have multiple other illnesses it’s really hard to differentiate between fatigue that might be brought on by depression or fatigue caused by my illnesses. “Check the box for lack of appetite.” Well… you see… when your stomach doesn’t empty things the way it should and you find yourself puking up meals, it’s easy to lose your appetite.

It’s the boxes that say, “Check any health problems you have.” that make me sigh because they will almost all end up having to be hand written under “Other”.

On one hand I feel better about knowing I’m going to go to therapy and maybe it will help, on the other hand, there is always this fear that no matter what I do I will always be stuck in this cycle and stuck with the fear and all the other things that make it hard for me to feel like I fit in.